Open letter

24 07 2011

I am appalled and immensely disappointed at the responses from some people regarding my obtaining a second cochlear implant on the NHS. I have been harassed and pestered to ‘tell all’, even after asking people to desist.

My personal information is exactly that – personal AND confidential. There is an issue of patient confidentiality here. How I got my cochlear implant funded, why I got it funded, and whether I met the criteria of my NHS Primary Care Trust or NICE guidelines, is my business and no one else’s. My personal case is not going to help you get funding for yours and is not up for discussion. I don’t make funding decisions so I have no idea how these decisions are made. Everybody is different, with a different set of circumstances and will present a different set of criteria.

I think it would be helpful to outline the appropriate framework if you are looking to go bilateral in the UK.

It’s no good going ‘I want one because I think two cochlear implants are better than one and loads of people say so’. There are a number of factors to carefully consider;

  • Research your NHS PCT’s criteria
  • Consider your PCT’s funding capacity
  • Examine the NICE guidelines TA166 – remember these are only guidelines and your PCT can exercise discretion in how closely they follow these guidelines (or not)
  • Present a list of valid reasons for two cochlear implants over any other option such as a cochlear implant / hearing combination. Useful information, explaining the benefits of being bilateral, can be found at 2ears2hear and Rationale for Bilateral Cochlear Implantation in Children and Adults
  • Present a cost / benefit analysis to your PCT
  • Take a copy of research studies demonstrating successful bilateral outcomes to your review meeting

Spatial listening tests
Spatial listening tests: results
Pediatric bilateral multi-centre study

  • Get your surgeon and cochlear implant team on your side
  • Consider your own personal medical and hearing history

To those who apply for NHS funding for a second cochlear implant, I respectfully ask that you please focus on the correct agencies to vent your frustration and find your way forward with them, i.e. your PCT, rather than expect me to pull a rabbit out of a hat for you. My case is mine, your case is yours. I wish you luck.

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11 responses

24 07 2011
Catherine

Hiya Tina. And when each of those who have been asking you to solve their problems follow the guidelines you set for them, their numbers will impress the authorities, and I am sure the bar will be dropped. Especially when those like you are reporting the gains to be obtained with bilateral hearing. September is going to be an awesome month! I feel like Christmas is coming early this year!

24 07 2011
graysdeafblog

Nice one Tina.
Great information. Sorry you have been hassled by a few jealous morons. It’s not your fault you got it after all. Maybe were just a bit more intelligent about your approach.
Good luck with the switch on 🙂

24 07 2011
andy

I’m disappointed but not surprised at the reaction of some deaf people. My experience is that a number of online deaf people just have no class at all. They are rude, ignorant and with a tendency to be economical with the truth. That’s exactly why I have left a couple of the groups that I was in.

Don’t take any notice of the ignorant ones, you do what is best for you and take your opportunities where you find them.
I’m most interested to see how you get on with two. I have had two hearing aids since I left school and the advantage of the synergism is noticeable. I am sure it will be the same with CI’s. I can’t have two CI’s it would seem but I’m not jealous or spiteful or resentful against people who can.
Keep on trucking and just put two fingers up to the destroyers of morale.

24 07 2011
Deafa

Andy, how do you know it is from deaf people themselves? It could be from anyone like parents who probably feel a second CI is more useful for children under the age 3 than adults. Thank you for stereotyping we don’t have any class. Remember Tina is deaf too. Stereotype one, stereotype them all.

25 07 2011
Admin

Actually, the harassment has come from deaf people wanting another cochlear implant but not getting approval.

25 07 2011
Deafa

Thank you for clearing that up. It make sense. I can’t imagine signing deaf would cared about a SECOND CI unless they are aftering funding. I can imagine hearing aids users would if they don’t fund HAs (unfair for them).

25 07 2011
Deafa

The reason i wrote stereotype deaf means you are stereotyping them all including you because deaf people (or hearing people supporting deaf ) tend to think exceptional from the very group they are stereotyping. It doesn’t make sense when they say deaf this and deaf that when they are deaf themselves. Therefore, stereotyping is fault. People are just different.

25 07 2011
Ian Noon

Where deaf people are experiencing difficulties in getting funding for 2nd, they could also try asking national campaign deaf organisations to support.

NDCS is supporting parents of deaf children who want a 2nd cochlear implant – parents can ask for support by contacting helpline@ndcs.org.uk

25 07 2011
andy

I was speaking generally, not just about people in here. And I did qualify it by saying “some” deaf people.

For example there is a deaf forum that recently posted a sound file claiming to represent the sound through a hearing aid compared with the sound through a CI. Predictably the sound through the hearing aid was much clearer than the CI sound.

Unfortunately for them, using the excellent quality sound of my CI I was able to detect that probably the files had been tampered with. My CI is far clearer than either of the sounds on the file. In other words this file has been deliberately altered so as to mislead other deaf people.
That’s a nice thing to do isn’t it?
What is it about these deaf people that they love to mislead and hurt others?
So yeah… bitter experience shows that there are some pretty sad deaf people out there.

25 07 2011
Deafa

No, i asked you how do you know it was from deaf people themselves? Basically, why you are quick to point fingers at deaf people? Doesn’t matter which background they are from.

25 07 2011
Deafa

Oops, i mean false, not fault.

Just don’t be quick to point finger at deaf people when hearing people are capable of doing the same thing if they wanted to.

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