Young harpist caught in clinical Catch-22 as she loses hearing

Chief Reporter

Monday 21 November 2011

HER favourite piece of music is Andrew Lloyd Webber's Evita, but she fears when she goes to sleep that she will never hear it again.

CAMPAIGN: Adel Wilson, aged 14, with her prized harp. She has lost the hearing in one ear and the other is deteriorating. Her mother Janet is campaigning for her to have cochlear implants. Left, the Wilson family, Roger and Janet, with Adel. Main picture: Julie Howden

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Lucy Adams Chief Reporter

Adel Wilson, 14, was taken from an orphanage in Russia and brought to live in Fife with her younger sister Karina just as, aged eight, she lost the hearing overnight in her left ear. The young harpist is now losing it in the rightear , but under national guidelines she does not qualify for a cochlear implant – the treatment that could restore sound.

With her right ear she can only hear sounds louder than 80 decibels – not the requisite 90 needed for the expensive operation. In order to get a right and left cochlear implant on the National Health Service, Adel has to reach the criteria before she turns 16.“It is a Catch-22,” said her adoptive mother Janet Wilson, of Hill of Beath. “She’s so scared of being plunged into a world of deafness and yet she’s effectively been told she has to wait until she’s deaf in order to get help.“When we went for the last hearing test Adel was crying, she was just so upset. She knew her hearing had dropped further. It is now about her mental health. The longer her left ear is left without stimulation the less likely it is the implant will work. The hearing in one side disappeared overnight and she is terrified the same thing could happen to the other side.”Adel participates in figure skating and ice dance at national level at Murrayfield, but she has stopped doing competitions because she struggles to hear the start of the accompanying music. Home-educated, she has been accepted by the Open University to study Spanish. In December she will be playing in the Harps of Gold concert in Edinburgh. She composes her own music, loves to sing and has countless certificates for local volunteering and conservation. She recently adopted Pettycur Harbour Beach in Fife and organises beach clean-ups.Both she and her sister were born with foetal alcohol syndrome – which affects her memory. She says she recalls little of Russia but knows now the orphanage was a difficult place in which to grow up. Karina had rickets. Their diet was made up of sweet tea, cabbage soup and bread. “I don’t hear as well as I used to,” said Adel. “The waiting and worrying is difficult. If I had the implant I would not have to spend all my time wondering where sounds were coming from. Music is so important to me. Some nights I wonder if I will wake up in the morning and hear nothing. I can hear the harp less than I could before, but at least I can still see my hands and feel the strings.“I don’t remember very much about Russia. I think I was okay because I didn’t know any better. I don’t feel Russian. I’m British. I wanted to join the RAF. I go to cadets every week, but they said my hearing means I could not join.” Dr Rae Glover, head of the National Cochlear Implant Users Association, said he was deaf for 40 years before he received an implant and heard “birdsong again for the first time”.“Adel is caught between two policies,” he said. “At 16 she is treated as an adult and will only be eligible for one implant, and the other issue is meeting the criteria for getting two implants now. It is a very hard case. The longer you leave it the more likely you are that the nerves in the ear will not be there. Before the Nice [National Institute for Health and Clinical Excellence] guidelines it was on a case by case basis. It is a very bureaucratic way of dealing with things. It seems remarkably unfair.”A cochlear implant is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing.Helen Eadie, MSP for the Cowdenbeath constituency, said: “The family have been stuck in a bureaucratic nightmare over this issue. They have been left waiting and hoping and that simply isn’t good enough. “I just want to ensure the family get the help and support they need so Adel can lead her life they way she wants to.“Some medical policies may make sense in the boardroom or even in the consultant’s office, but when they are damaging the chances for a super young person then they need to be looked at again.”A Scottish Government spokeswoman said: “While it would be inappropriate for ministers to intervene in any clinical assessment made in an individual case, we have been assured by the cochlear implantation service that they will continue to work with and support Adel and her family and monitor any further deterioration in her hearing.“It is to be hoped Adel will not suffer any further loss of hearing, but should her hearing reduce to the level specified for cochlear implantation, then this facility will be made available.”

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Young harpist caught in clinical Catch-22 as she loses hearing

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