CIICA World Survey Report November 2023
High satisfaction rates with CIn technology but lifelong funded services are needed.
The full Report can be seen here
BBC’s Love Island Programme July 2022
This popular programme features Tasha Ghouri a 23 yr old cochlear implant user who was born deaf and implanted when 5 yrs old.
Her proud father explains the difficulties she experiences as a CI user in communicating in noisy circumstances and with large groups of people.
She is to be congratulated on pursuing her life despite these problems, as do all CI users.
See the programme at https://www.bbc.co.uk/news/av/health-62335683
BCIG Leaflet on MRI scans May 2022
BCIG has just published an important leaflet on Safety & MRI scans.
it can be seen here
CIICA LIve Event on Adult CI Rehabilitation January 2022
CIICA have just published this important event which can be seen here
CI Futures Forum Webinar Series September 2021
This important series of webinars by panelists of experts in adult cochlear implants organized by Adult Hearing is available here.
Tinnitus & Cochlear Implants Leaflet 18 August 2021
The British Tinnitus Association in conjunction with Cochlear Implant Group (BCIG) have published a very important leaflet.
This information has been written to help you understand more about tinnitus if you have a cochlear implant, or are being assessed for one.
See here for the full details.
Useful Apps for Mobiles 14 May 2021
LiveTranscribe app displays conversation from Covid masked speakers and gives great improvement in communication.
Disabled Passport is a commercial app to demonstrate to business and retail premises and transport services one’s deafened status and rights
CI User Experiences 19 April 2021
The NCIUA is seeking CI User Experiences to prepare a new edition of its popular booklet on this important subject for potential candidates.
A full explanation and details of how to submit one’s story can be seen here
International Cochlear Implant Day 25 February 2021
To celebrate this annual event, a new network of organizations was launched to promote the role of advocacy in the growth of cochlear implant availability across the globe.
The CIICA- Cochlear Implant International Community in Action – sets out its background and purpose in a document here.
Its website can be seen at www.ciicanet.org
RNID : Action on Hearing Loss reverts to its former title – Royal National Institute for Deaf Poeple (RNID) on 2 Novemeber 2020
First Global Consensus on use of Cochlear Implants 28 August 2020
An International Consensus on the criteria and provision of cochlear implants with standards of care for adults has been published by Adult Hearing.
This publication outlines international medical and audiological consensus on minimum standards of care for unilateral adult cochlear implantation togther with some of the key evidence to support those standards.
With only 5% of adults who could benefit from a cochlear implant actually getting one, it seeks to raise awareness and understanding of cochlear implant use in adults acrooss the world.
Local Support Group announces a Virtual Zoom meeting!
Colin Joyce, Secretary of the Cambridge Cochlear Implant Social Group (CCIS) has organised a Virtual Zoom meeting in September
after running trials this summer. Full deatils can be seen here
Her Majesty The Queen opens new RNENT Auditory Implant Centre 19 February 2020
Following the move of the RNENT Auditory Implant Centre from Grays Inn Road in London to Huntley Street nearby in September 2019
The Queen formally opened the new centre having been received by Her Majesty’s Lord-Lieutenant of Greater London, Sir Kenneth Olisa (see photo).
The Queen toured the centre and met clinicians and staff (see photo) and cochlear implant users, 4 adults and 2 children, one of whom presented the Queen with a posy( as featured on The Times front page).
CHOICE launches service detail Video 11 February 2020
CHOICE, the remote care service for CI users, launches a video explaining how the remote care service operates and the benefits for CI users to remotely , by internet access,
explore the multiple services that can be accessed this way. The video can be seen at :https://youtu.be/HoAsPH9sZx4
The system supports devices of all the manufacturers and users can still come to their CI centre when they need help with something.
A flyer explaining the service can be seen here.
The service is for adults who have been CI users for over a year.
This service is only available to CI users under the care of the following CI Centres currently though it is planned to extend this service to other Centres.
Cambridge, North East, Manchester, Nottingham, RNTNE, Southampton and St Thomas
NHSE publish CHSWG on Chidrens Hearing Loss 22 November 2019
NDCS has been progressing one of the Action Plan guides for children with hearing loss, which was originally commissioned by NHSE as part of the original work program for the What Works Guides.
NHSE has now published the CHSWG guidance which can be accessed at https://www.england.nhs.uk/publication/what-works-guides-action-plan-on-hearing-loss/
BAA Launch CI Awareness Video 18 November 2019
The video is launched to help the general public, audiologists, GPs and ENT staff to understand cochlear implants.
It will be followed by a version for TVs at GP surgeries and Audiology waiting rooms.
CI Champion Scheme 18 November 2019
BAA & BCIG have launched a ‘CI Champion scheme’ – to will train a ‘Champion’ from each referring site so they can lead implant referral in their site.
They will train & support their team, and audit referrals/appointments to ensure all eligible adults are told about implants and understand what they can provide – so adults can make an informed choice.
Technology Day 10 October 2019
This event arranged for 2 November in Cardiff has been cancelled
London Marathon 28 April 2019
Our Ambassador , Melanie Jewett completed her 100th marathon in the London Marathon running in a bridal outfit with her fiancé Rob. Melanie won a bronze medal in the marathon at the 2013 Deaf Olympics held in Sofia. Her implant life experiences can be seen here
Pioneering brain surgery that allows children who are deaf to experience the sensation of hearing for the first time is being made routinely available, NHS England announced today 22 April 2019.
Two highly specialist teams at hospitals in Manchester and London will perform Auditory Brainstem Implants (ABIs) surgery for children who are deaf across the country.
The surgery is for children who are profoundly deaf, aged five or under, who are unable to use conventional hearing aids or implants because their inner ear (cochlea) or auditory nerve did not develop properly.
The highly complex procedure involves inserting a device directly into the brain to stimulate hearing pathways, bypassing the cochlea and auditory nerve that have not developed properly.
NICE Revises Guidelines – 7 March 2019
NICE has revised the candidacy criteria for cochlear implantation following a part review of TA 166 first published in 2009.
Following submissions from leading stakeholders, including NCIUA, section 1.5 of TA 166 has been revised
by setting a new level of hearing loss at 80dB , down from the prior 90dB. This will be measured at four frequencies compared with the current two.
The former BKB sentence listening test is replaced by the Arthur Boothroyd word test.
Criteria for children is also adjusted.
Full details can be seen on our NICE page
FOUNDATION Survey launched – 12 March 2018
The survey aims to gather your views about whether it might be possible to conduct a clinical trial comparing bilateral implants with unilateral implants for adults.
NICE has asked for this trial to be conducted, and the FOUNDATION study is looking to see whether it will be possible to run such a trial in the UK.
You do not need to have experience of bilateral implants or knowledge/experience of clinical trials to complete the survey.
The FOUNDATION study team would like to encourage any adult with a cochlear implant to complete the survey.
The survey is also open to adults who are currently being assessed for a cochlear implant.
For further information, please visit http://www.foundation-study.org.uk. where you can enter the survey
NICE Consultation on Cochlear Implants – 23 January 2018
As noted below NCIUA have responded to this consultation the details of which can be seen here.
NICE Issue Consultation on Cochlear Implants – 18 December 2017
NICE have issued a consultation phase on TAG 166 , the current guidelines for cochlear implantation for adults and children.
It closes on 23 January 2018 and calls for submissions regarding section 1.5 of the guidelines which specify the candidacy criteria for implantation.
As a registered stakeholder the NCIUA will be responding appropriately.
Parliamentary Debate on Deafness and Hearing Loss – 30th November 2017
A debate on Deafness and Hearing Loss was held in Westminster Hall led by Jim Fitzpatrick MP, Chair of the APPG in the House of Commons.
He highlighted various aspects of the Governments Action Plan on Hearing Loss and sought assurances on their implantation from the Parliamentary Under-Secretary of State for Health,Steve Brine.
The full report in Hansard can be seen here .
Mr Brine stated that NICE would be consulting with stakeholders on cochlear implants in 2018
BMA Patient Information Awards – 18 September 2017
Our NCIUA booklet “So what’s it like having a Cochlear Implant: the Experiences of Adults” had been highly commended in this competition which is run by the British Medical Association.
The judge commented, ‘I am very impressed by this resource which provides a wealth of information from the users’ perspective which is so often missing from consultations with professionals especially around
Nigel Williams, Tricia Kemp and Alison Heath attended the award ceremony at BMA House. It was very impressive and attended by at least a hundred people for the presentation of special awards from the shortlist of highly commended resources which included publications from NHS Trusts and some major voluntary organisations.
Although our booklet did not win an award we did get a certificate and feel honoured that it has made its mark in such a large national competition.
Westminster Debate on Cochlear Implants – 24 March 2017
Jim Fritzpatrick, Chair of APPG on Deafness at Westminster, posed questions to the Under Secretary of Sate for Health, David Mowat in an adjurnment debate on the provision of CIs.
Mr Fritzpatrick had been briefed by Brian Lamb, Chair of ACIAG, by a comprehensive paper on the low provision of adult CIs due to the stringency of the NICE criteria and that these were in need of serious revision.
The Minister stated that Parliamnet was extremely keen to it comes to the right answer in a process where there is an element of age discrimination in the lack of provision to elderly people by the commissioners.
“We will make sure that the fact that cochlear implants can make such a radical difference to people’s lives is emphasised with GPs as part of the process.”
Ambassador Melanie Hewitt stars on Videos about Cochlear Implants – 7 March 2017
Melanie is featured in a series of videos published on YouTube by the Auditory Implant Service, Southampton.
Five really useful videos, with sub titles, on the benefits of cochlear implants and experiences of our Ambassador and other users.
See them on the links at the end of Melanie’s own page.
Commisioning Services for Hearing Loss – 3 March 2017
To mark World Hearing Day, the NHS held a major conference in London to launch a report on Commissioning Services for People with Hearing Loss which can be seen here.
The report sets out a Framework for Clinical Commissioning Groups (CCGs) to implement the objectives and reccomendations of the Governments Action Plan on Hearing Loss.
Fiona Carrager, Deputy Chief Scientific Officer NHS England who led the conference stated that an update on progress in this important agenda would be made within the next 12 months.
International Cochlear Implant Day & WHO World Hearing Day – 17 Febrary 2017
In celebration of these important events , already listed on the Events page, a comprehensive document has been released setting out the significance of deafness today, its impact upon society and the economics of non treatment versus the the benefits and value of cochlear implant treatment. It has been produced by the Adult Cochlear Implant Action Group of which NCIUA is a committed and active partner.
The full statement can be seen here.
BBC Radio Publicity – 14 Feb 2017
Our NCIUA Ambassador, Melanie Hewit, featured in a BBC Cambridge and Radio 5 Live interview as part of the Naked Scientist series.It will be repeated on ABC Australia!
The full programme can be seen at: https://www.
thenakedscientists.com/ podcasts/naked-scientists/ meteorites-space-invaders.
Scroll down to entry 22.28
Cochlear Implant Candidacy- Jan 2017
BCIG have published a consultation questionaire to seek a consolidation of modern views on the most appropiate assessment criteria for implantation.
All views are welcome and the questionnaire can be completed at http://www.cicandidacy.co.uk/. End date 31 Jan 2017
Turn and Ear to Hear
Intriging and useful research results from a study by Jacques Grange at Cardiff about the problems of listening in noise. See here for the full details.
Media Publicity for Cochlear Implants – November 2016
TV Channel 4 broadcast a programme – Breaking The Silence- on 22 Nov in which several adult people were shown undergoing their ‘Switch On’ and their reactions to this very emotional expererience. It was unique in that the audiologists involved are all members of the British Cochlear Implant Group, the NHS professionals who work at the implant centres. The programme can be seen at; http://www.channel4.com/programmes/breaking-the-silence-live
Media Publicity for Cochlear Implants – April 2016
A TV programme “What would be your Miracle” was shown by ITV at 9 pm on Thursday 28 April which featured a mature lady receiving a cochlear implant and of her successful outcome. This life transforming procedure was her miracle and she was overwhelmed with the result. The first of a 3 part series the second programme on 5 May will feature a young girl receiving a cochlear implant.
New Drug Trial for Cochlear Implant Users – April 2016
A UK based company called Autifony Therapeutics is developing a drug, AUT00063, which modulates the channels that are critical to the function of the neural circuits involved in central auditory processing. It is thought that by increasing the precision and timing of neural firing (allowing neurons to “quickfire”), AUT00063 will enhance central auditory performance, and in particular, temporal resolution. Autifony is conducting a pilot evaluation of the benefits of AUT00063 on some aspects of central auditory processing for CI users.
Full details of this drug trial can be seen here.
Press Release – Feb 2016
“The National Cochlear Implant Users Association (NCIUA) is pleased to announce the appointment of Deaf Olympics athlete Melanie Jewett as our official ambassador. Melanie won the bronze medal in the marathon at the 2013 Deaf Olympics and remains in training. Melanie has a cochlear implant and has benefitted enormously from this life transforming treatment for severe/profoundly deaf people. She has never let her deafness hold her back – she holds a responsible job in IBM and is fully engaged in the normal hearing world. Melanie will help us bring awareness and information to the outside world about the huge benefits of cochlear implantation and also provide encouragement for and advice to potential and new cochlear implant users.”
Nigel Williams, Chairman of NCIUA, is named as the 412th Point of Light by David Cameron, Prime Minister for supporting deaf adults– Jan 2016.
Points of Light are outstanding individual volunteers – people who are making a change in their community. Every week day the Prime Minister recognises an inspirational volunteer with the Daily Point of Light award.
A Cardiff volunteer who has supported deaf adults both emotionally and practically through establishing support networks and rehabilitation programmes. Nigel Williams, 59, was inspired to support adults with hearing loss and their families after becoming deaf at the age of 16, due to meningitis. Nigel believed that more could be done to assist the hearing impaired and wanted to use his personal experiences to help adults cope with the impact of hearing loss.
Nigel is also Chairman of Hearing Link, a leading UK charity tailored purely to helping adults and their families cope both emotionally and practically through a support network of volunteers. Nigel has volunteered at Hearing Link for over 12 years and, under his steer as chairman, the charity has grown and developed ways of helping all those who rely on them. Hearing Link offers a wide range of services including a Self Management Programme and a week long Rehabilitation Programme where participants receive practical support in dealing with hearing loss delivered by volunteers who themselves have experience of living with hearing loss. In addition to these programmes Hearing Link provide one to one community sessions and an online support forum supported by volunteers.
Nigel’s work has led to many users of the charity becoming volunteers themselves and giving back to others. Nigel is also the Chairman of the association that represents people who rely on cochlear implants, electronic devices that replace the function of the damaged inner ear allowing people to hear. The National Cochlear Implant Users Association works to improve awareness of the support that is available for people needing the implants. As Chairman, Nigel set up effective partnerships with support groups, including with the three UK’s most influential charities for deafness. Together they have changed the standard treatment for deaf adults in the UK, raised awareness and given evidence to government to ensure that cochlear implants are now regarded as a standard method of treatment when an adult becomes deaf, regardless of cost.
Prime Minister David Cameron said:
“By bringing together two of the biggest charities working with deaf adults in the UK, Nigel has made a huge difference to the services and support available to them. He has also played an important role in making sure the guidance given to the NHS on treatment for deaf adults offers them the highest standard of care. I am delighted to recognise Nigel as the UK’s 412th Point of Light.”
Nigel Williams said:
“I am surprised and thrilled to receive this award which I hope will encourage everyone who is dealing with hearing loss, which often impacts on far more than your ability to hear. The consequences of hearing loss often affects a person’s confidence and self-esteem and through practical support from people who live with hearing loss themselves people soon see that this need not be a barrier to leading a full and rewarding life. It’s a privilege to work with an organisation such as Hearing Link and I am grateful to everyone involved who provide so much help and support to others.”
See original page at https://www.pointsoflight.gov.uk/supporting-deaf-adults