A sign of the times
Wednesday, 17 October 2012

A sign of the times

They can be a silent minority, but it’s high time that the millions of people with hearing loss came in from the cold.

Written by Vanessa Berridge
A disturbing information video from the Deaf Children, Young People and Family Service shows the bitter isolation experienced by Danny, a deaf teenage boy, both in his mainstream school, and at home. He sits through Christmas lunch, unable to follow the conversation, increasingly cut off from his family, who have failed to learn to sign because 'the class is always on the wrong night'.

Desperate to make his parents understand, he becomes aggressive. A visit to the GP follows. Danny goes in alone, but is unable to lip-read because the doctor sits with the light behind him. So his mother is called in, and, again, the conversation continues without him. When the family is referred to a signing counsellor and interpreter, Danny's parents finally appreciate his frustration.

This powerful film flags up many issues experienced daily by the deaf: an estimated 10 million in the UK have some form of hearing loss, of whom about 70,000, according to a recent article in The Lancet, are profoundly deaf. Many of these communicate through British Sign Language (BSL), rather than spoken English, and refer to themselves as the 'Deaf community'.

A hearing mother whose younger daughter was born profoundly deaf explains that the whole family learned to sign so that they had a shared language. It was also the language through which her daughter would be able to learn and to receive her education. 'I've heard many deaf people say they have little or no communication with their families unless their families are also deaf and they share a first language,' she says.

'That is why deaf people often say that the Deaf community is their family and is so important to them. Imagine what it might be like to grow up with your family talking to each other and not to you. Not even to tell you what you had done wrong, you're moving to a new house or going to have a baby brother. One can appreciate the effect on a child's self-esteem if that is their start in life. I don't know if one can ever make up for that.'


Several charities in their different ways attempt to do so. The oldest is Action on Hearing Loss, which marked its centenary in June 2011 by changing its name from RNID. A spokesman explains that 'because of the 'D' in RNID, people with a hearing loss didn't think we were relevant for them, when we have a huge range of resources and services for anyone affected by hearing loss and tinnitus'.

The NDCS is the leading charity for family support, for children suffering from glue ear to profoundly deaf people. Ninety per cent of deaf children go to mainstream schools, where they are often isolated, as in the video. The charity's Listening Bus travels to schools across the UK, raising awareness and reaching remote communities with little or no support for deaf children. The bus offers visual activities, using different technologies, which can be enjoyed by both hearing and deaf children. It also provides counselling and support for parents and teachers.

The charity is currently concerned about the effect of public service cuts on deaf children, both in mainstream and in special schools. About 25 per cent of councils are cutting specialist support, according to Jo Campion, NDCS's deputy director of campaigns.

'Most parents don't know what to do when they discover their child is deaf,' she says. 'They need advice on whether they should learn to sign, for example. Deafness doesn't affect the cognitive function, but there are communication barriers, and children, teachers and parents need help with negotiating these. This vital support is being cut.' The charity is spearheading a Stolen Futures campaign, and asking for 100,000 signatures on a petition to present to central government.

'These cuts could have a damaging effect on deaf children's futures. Already 60 per cent of deaf children fail to get five good GCSEs, compared with 30 per cent of hearing children,' Campion adds. 'The social cost will be greater in the long term if these cuts take place and we'll pay the price.'


As highlighted in the information film, healthcare is another area where deaf people in general are at a disadvantage and where an unwillingness to spend money on signing interpreters, for instance, has incalculable effects for the profoundly deaf. A recent report from Action on Hearing Loss found that almost 50 per cent of deaf people left the doctor's surgery confused about their condition and medication, and a quarter had missed repeat appointments because of communication difficulties. Making an appointment itself may require someone with hearing loss actually to turn up at the surgery, and if the patient is then called by name, rather than physically fetched, the appointment may be missed.

'Every deaf person has had bad healthcare experiences,' says Andrew Alexander, a consultant at the Royal United Hospital in Bath, and the father of a deaf daughter. 'A deaf friend told me that he had two scars on his stomach from surgery and he didn't know why.' Even worse is the case of a nine-year-old being asked to act as interpreter when his deaf mother was given the diagnosis of cervical cancer.

Adult patients are expected routinely to bring family members with them to act as interpreters. Marie, after a series of doctors' and hospital appointments, during which she was given no communication support, was diagnosed with an ovarian cyst, and needed an immediate operation, followed by three weeks in hospital. 'My mother was with me every day and no interpreter was ever offered,' says Marie. 'No one seemed to think that might be a burden for her.'


The crucial need for BSL/English interpreters for both patient and clinician is the message that Dr Alexander wants to get across to clinicians and those commissioning healthcare – and one of the reasons he is joining SignHealth as its medical
director in 2013. The charity has been working for more than 20 years, initially to improve the mental health of deaf people, but now it's right across the board. 'Deaf people have worse healthcare,' says Dr Alexander. 'I have been working with SignHealth for the past four years on a major research project to investigate whether they also have worse health.'

There have been developments in deaf health support, such as SignTranslate, a system connecting doctor and patient through computer and webcam to a remote interpreter. Given the shortage of face-to-face interpreters, this 24-hour service is a huge advance as deaf patients can have emergency access to interpreters.

In his new role, Dr Alexander is keen to raise awareness of the particular language-based issues deaf people face, and to help produce guidance for healthcare professionals on dismantling the barriers and working with the deaf. Better healthcare for deaf people will save costs by reducing missed and repeat appointments, improving the treatment of chronic diseases such as diabetes, thereby minimising complications, and reducing delayed diagnoses of cancer.

'If you get healthcare right for profoundly deaf people, you'll get it right for every deaf person,' the doctor concludes.

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