A few weekends ago I went to the National Association of Deafened People (NADP)’s conference and AGM in Southampton. I was really looking forward to it for two reasons: firstly because I had been nominated to become a Trustee of the NADP, and they were going to announce the new Trustees at the AGM there, and secondly I was looking forward to meeting other deafened people for the first time, who I had chatted to on some deaf-related Facebook forums, but never actually met in person before. I have also never been a Trustee of a charity before, so I was thrilled at the prospect and looking forward to working on deaf-related issues, which I feel really passionate about.
I woke up very early on the Saturday morning and drove to Southampton with my wife Joanna. We arrived right on time at Southampton Solent University Conference Centre, where the conference was being held, and after a quick coffee and a brief chat with a few friendly faces, we headed straight into the main auditorium for the conference. Once inside, I immediately noticed that the access in terms of communication support was excellent. There were two BSL interpreters, a lipspeaker and live speech-to-text reporting (STTR) of the full day’s proceedings, which was being relayed onto a big screen behind the speakers. I thought that this was total communication support done really well to provide great access and inclusion for everyone.
The conference was celebrating the NADP’s 30th anniversary and also thirty years of Ross Trotter as Chairman, who is standing down this year and being replaced by Lidia Best. The theme of the conference was how communication has changed in the thirty years of the NADP’s existence.
The first presentation, which was given by Anna Duncan and Sara Flynn from the Auditory Implant Service at Southampton University, was fascinating. They talked about the past, present and future of cochlear implants, and also spoke about the experiences of the hundreds of cochlear implant recipients in Southampton.
I am particularly interested from a personal point of view because I am currently waiting to receive a cochlear implant (CI) myself, so I found what they talked about useful and informative. CIs have come a long way since Graham Carrick received the world’s first commercial implant in 1982. The implant totally transformed his life and he said that he “wouldn’t be where he is today without it”.
In 2014 there are approximately 324,000 cochlear implant recipients worldwide. In Southampton, by March 2014 they had 558 adult CI users (with a further 52 undergoing assessment) and 338 child users (with a further 16 undergoing assessment). The youngest recipient was six months and the oldest was 91 years old. After explaining what a CI is and how it works, they then went on to talk about the main issues and challenges for cochlear implantation today in the UK and abroad and what the future holds for cochlear implants in terms of development of both the technology and the sound quality, new research areas and official requirements regarding a person’s suitability for a cochlear implant.
There are strict NICE guidelines regarding who is suitable for a cochlear implant and currently they recommend bilateral implants for children and unilateral for adults (except for those with a visual impairment). While the average BKB score (a hearing and speech recognition test) pre-implant (with hearing aids) was only 9%, post-implant it is 70%, so there is an average improvement in the score of 61%. The outcomes are variable depending on the recipient’s hearing history.
It’s interesting that children are entitled to two implants on the NHS under the current guidelines, but most adults only one, and this is something they talked about in more detail. Having two implants helps recipients tell where the sound is coming from as they have sound from both ears. Also, listening in noisy environments is easier. Research is currently being carried out on the benefits of having two implants for adults, as there are obviously cost implications, in addition to looking at the benefits in terms of the recipient’s improved quality of life.
Other areas of research currently being carried out are bimodal stimulation (where someone has a CI in one ear and a hearing aid in the other), research on listening to music with a CI and how the quality of the sound can be improved. For me, when I first lost my hearing, not being able to listen to music, which I absolutely love, was one of the things I really missed most, and I still do.
Further developments include the user having an accessory to make the CI waterproof, so that they could wear them while swimming. For the future, they are looking at developing CIs, which would preserve residual hearing via the development of surgical techniques using thinner electrode arrays, as currently, all residual hearing is killed off during the implantation.
The other really fascinating areas of future research they are looking at is stem cell technology to regenerate auditory neurons and cochlear hair cells, and also the use of drugs within the cochlea at or around the implantation. Scientists think that drugs may improve outcomes with CIs and prevent further hair cell loss in the inner ear, but the problem is that they don’t know how long these effects will last. I think the next thirty years of cochlear implants are going to see some really exciting developments.
After lunch we had the NADP AGM. Ross Trotter was presented with a carriage clock for his many years service chairing the NADP and we all thanked and applauded him. Then he handed over responsibility to the new Chairman, Lidia Best, who gave a short speech. All the new Trustees, including myself, were introduced to the audience and welcomed to the NADP Committee. It was a really proud moment for me.
Later that evening after the day had finished, a group of us had a meal together at the ‘Premier Inn’ where we were staying the night. It was a great, relaxed atmosphere where everyone felt comfortable and relaxed. It was really good to meet Tina Lannin there for the first time, a fellow Trustee, who had just arrived from London where she had been at City Lit’s ‘Deaf Day’, and I also had a good chat to Sally Clark, who is also now on the Committee. The best part for me was that as a group of deafened, hard of hearing and hearing people, we all got on with each other really well and chatted away happily, no matter what each other’s communication needs were.
Whereas I used a combination of communication tactics such as lipreading, talking, SSE and a bit of signing, some people didn’t know BSL at all whereas one deaf person I spoke to relied completely on BSL to communicate. I was really relieved that people were happy to write notes down for me when I couldn’t follow what they were saying, particularly when I was struggling to communicate in BSL. I was also glad to see that people in the group were writing things down for CJ on his ‘Boogie Board’ tablet, which I’d never seen before. I thought that was a great idea to help support communication.
I went to bed late that night, but happy after such an eventful day. It was lovely to meet all these new people and catch up with old friends too. I am thrilled to have been voted as a Trustee of the NADP and I am really looking forward to working with the other Committee members to campaign for better access to everyday services and employment for deafened people. I feel really passionate about trying to break down barriers to equality and inclusion in our society and also working with younger people on the Committee, who hopefully will bring in fresh ideas and a positive attitude towards change and breaking down divisions. I am excited about the future of the NADP and looking forward to some great things ahead.