NICE guidance
Viewpoints
Tricia Kemp*
Co-ordinator of CICS and Vice Chair of NCIUA
Speaking as the parent of a young adult cochlear implant user and as the Co-ordinator of the Cochlear Implanted Children's Support Group, (CICS) I was delighted with the outcome of NICE's Health Technology Appraisal of cochlear implants. I am not saying this from a soap box position that all children should have bilateral cochlear implants - far from it - but I do strongly believe that everyone should have the choice.
I was heavily involved in the appraisal process, firstly as the representative of CICS as an appointed consultee organisation and secondly as a "Patient Expert". It involved a lot of meetings, a huge amount of reading and a mountain of paperwork. Anyone who knows me knows that I am not a fan of politics and bureaucracy, but I overcame my dislike of these to get stuck into fighting for a cause about which I am passionate. Yes, it was a long-winded process, but it was extremely thorough, and rightly so, and I was impressed by the panel's obvious genuine interest in cochlear implantation, the sensible questions they posed during meetings and their willingness to listen not only to outcomes of research and the views of professionals, but also to personal evidence from implant users and parents of implant users.
During the process of putting together our submissions and responses, we liaised with other charities such as The Ear Foundation, the National Cochlear Implant Users Association, the NDCS and the RNID. It was an effective collaboration making sure that, between us, we covered all necessary aspects, and with each charity working hard to do its absolute best to represent the interests of those who already had the benefit of a cochlear implant and those seeking assessment for the procedure.
Of paramount importance was to bring about an end to the postcode lottery, which prevented some adults from accessing funding for implantation just because of where they happened to live, and this was achieved relatively quickly. Achieving the CICS Group's ultimate goal for deaf children of approval of simultaneous bilateral implants for new cases, and of sequential bilateral implants for existing unilateral users was the nail-biting process. But we got it - subject, of course, to the children meeting the clinical criteria for implantation and the procedure being recommended by the child's cochlear implant professionals.
If I achieve nothing else in the cochlear implant world I shall be proud to look back and say that in a small way CICS helped to bring about the availability of a choice of procedure that represents greater access to the hearing world for this and future generations of deaf children.
However, there is more to be achieved, and I sincerely hope that another appraisal of cochlear implantation will enable all born deaf and deafened adults to be offered simultaneous or sequential bilateral implants. I also hope that sufficient research is being carried out to gather evidence for this "campaign". I don't think I will ever be a "political animal" but if negotiating politics and bureaucracy can bring about such positive outcomes for deaf children and adults as it has in 2009, then I guess I'll be ready for the next appraisal!
NICE has been criticised in the past, but in this case I would like to say a hearty "nice one NICE"!
*Tricia Kemp is passionate about anything that can improve the lives of deaf children and adults.In 1993, having seen the difference a cochlear implant made to her son and the value of contact with other families, she co-founded the Cochlear Implanted Children's Support Group to provide contact, information and support for families whose children already have cochlear implants and for those who are thinking about an implant for their child. She is still the Group's Co-ordinator and is also the Vice Chair of the National Cochlear Implant Users Association, a Trustee of The Ear Foundation and a Governor of Knightsfield School for hearing impaired pupils.
