The Robinson family

Luke, born in September 1999, was deafened following meningitis he contracted when he was four and a half months old.

Surrey PCT provided funding for his first cohclear implant in April 2002, when he was two and a half. Bedfordshire PCT paid for the second in September 2007.

Why did you feel a bilateral was important?

Luke had meningitis so there would be no opportunity for use of future technology. He also has articulatory dyspraxia so any additional access to sound to hear pronunciation of words would be beneficial.

How did you go about getting funding?

Back in April 2006, our implant centre, at the Royal National Throat Nose and Ear Hospital, originally told me that we would not get funding. However, after seeing other children benefit we went directly to the PCT via my GP. We wrote to the Exceptional Cases Panel along with Luke’s surgeon supporting his case for sequential. It was refused initially, so we went to appeal with the assistance of the MP, Luke’s Teacher of the Deaf (ToD) at school and a further appeal from the surgeon. They agreed it on the additional evidence provided.

If NHS funded, what do you think made the difference in securing funding?

The strong supporting letter from his ToD at school and the meningitis.

What advice would you give other parents seeking NHS funding?

Collate as much supporting evidence as possible from all those involved with your child. Try and show the financial viability of them having a 2nd implant.

How long since bilateral switch on?

One month.

What benefits are you seeing?

It is very early days. However, Luke seems more confident. It was amazing at switch on – he could actually hear with his right ear. A very emotional moment for me.

Luke has just had his three month review and, while he will never be a superstar, the gain in having a second CI we believe is significant and his school have confirmed that. The teacher does not have to make eye contact when reading the register - even when he is absorbed with another task he responds. They no longer raise their voice to speak to him - he naturally hears them even when it is a relatively noisy environment. Some of the children at school have reported his speech is easier now to understand. Whereas it would be difficult to engage him in social conversation in a noisy restaurant, he now seems more able to participate at his level of language. He is picking up phrases, some good some bad, particularly the irritating 'Churchill Insurance Dog' on the television and my cursing at other drivers when driving my car! His confidence seems to have grown and, while you could put that down to development, it has coincided with his second CI. For a child who I was told would never talk due to his problems, I am elated by his progress.

Are there things that have been important post-switch on in getting these benefits?

Too early to say at the moment.

What does your child think? How involved were they in taking the decision? What do they think of it now?

Luke was very keen on having another ‘ear’. He was very proud of it and showed everybody. We sincerely hope that he will benefit in the long run.