Making changes as a parent by Keighley Miles

calendarDecember 18 2019

Recently I found out that our local hospital has a CHSWG group (Children hearing services working together) and after attending some working in partnership training with National Deaf Children’s Society (NDCS) I decided to volunteer to become a parent representative. This means at the meeting I can put the parents’ views across and make the services work for us and our children.

My first meeting For CHSWG was a confederates CHSWG meeting. It was one where all the hospital and services from across Essex came together, so different to the general meetings, but very informative. NDCS gave a presentation on Education in deaf children. Only 40% of deaf children (mild-profound) acheive a good level of development. This goes down further for children from poorer backgrounds or those with English as a second language (EsL) and yet again for profound deafness. As a mum of a profoundly deaf child, I found this figure very worrying and it’s something I will be bringing up at the local CHSWG meeting. We need to improve these figures! Why are they so low? This is just one of the questions I will be asking. It’s not acceptable that a disability that only effects the hearing sense is allowing these children to fall so far behind their peers. I am thankful that as a parent rep. I will be able to ask these questions and feedback the answers to other parents.

Next we heard from University of Cambridge who are starting a very exciting research project in the latter part of 2020 in the South-East of England involving a cohort of deaf and hard of hearing children and looking at their development over the primary school years. The project has been funded by the Medical Research Council and aims to provide a representative assessment of outcomes for children identified at the UK newborn hearing screen. This was welcomed news and we are excited to find out more.

We heard from Oticon who have a fantastic new hearing aid coming out called Oticon open play. It has been ready since May but delays from the NHS has meant it’s still not available, but they are hoping soon! It has 360 directional sound. They wanted a hearing aid which gives children access to all sounds and works in children’s listening environment = loud. It allows children to not look and something which is fantastic for their learning, the ability to overhear, a way in which child learn. Speech sounds were improved by 30% in test. ALSO it’s the first hearing aid to have an app to control it, and sends text messages when the battery is low. Lastly, we heard from Phonak who have a new device called the roger select which again sounds fantastic, it allows you to have a number of speakers and you can mute selected talkers.

It was an interesting morning and I got to meet lots of people, who will be able to help me in my role as parent rep. If anyone has any issues they would like to bring up, ask your local audiologists or teacher of deaf who the local parent rep is for your area. It’s important that us parents take action and don’t just keep talking about the changes they want to happen so if you have a chance to be involved in your local services please take it!

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I’m Keighley I’m profoundly deaf with Cochlear Implants (CIs) I grew up in a hearing family so didn’t learn British Sign Language (BSL). I have 3 sons my oldest and youngest are hearing, my middle son is profoundly deaf also with CIs when Leo was 18months we started to learn BSL as a family and it’s been life changing. I spend my spare time arranging events for other deaf families and children.

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