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"You've missed your appointment."

You’re sitting in your GP’s surgery and your name is called out over the tannoy system. Unaware, you continue flicking through a magazine. After waiting for some time, you approach the receptionist to ask whether the doctor is running late, only to be told that you’ve missed your appointment as your name was called 15 minutes earlier. The receptionist had forgotten you were deaf and would not have heard the announcement.

This is the kind of experience many deaf and hard-of-hearing people encounter when trying to access health services.

With one in seven people in the UK having some form of hearing loss, the average GP sees up to four patients with impaired hearing in their surgery every day.

Let down by health services

Despite this, a report out this week from hard-of-hearing people’s charity the RNID reveals that they are often let down by health services. It says that the NHS could soon be breaching the Disability Discri-mination Act 1995 because by October service providers will need to have made all “reasonable adjustments” to ensure services are fully accessible to disabled people.

Lack of communication technology and deaf awareness training for staff as well as a national shortage of British Sign Language interpreters exacerbate the communication problems for deaf people.

Paul Redfern, head of community development at the British Deaf Association (BDA), says: “In one incident, a deaf woman went to hospital to see a gynaecologist. She had her seven-year-old son with her. Because there was no interpreter the gynaecologist wanted to use her son as the interpreter. The woman, naturally, refused.”

Redfern draws a parallel between deaf people’s experiences and those of adult asylum seekers who are often expected to use their children as interpreters, even when dealing with sensitive or medical information. “It’s not about deafness as a disability, it’s about using a different language – like asylum seekers,” he says.

"The situation can be improved"

The BDA has a project in Wales called Visible Voices which has set up local groups of deaf people who negotiate with social services and health authorities about what they need. As a result, all health trusts and 50 per cent of doctors’ surgeries will pay for an interpreter if asked.

It shows that the situation can be improved, says Redfern, but takes regular talks between service providers and users. “Otherwise, providers can put in services or equipment that don’t meet users’ needs and then they feel they have wasted their money, and users need to be aware that the budgets are limited so they ask for what is realistic. That way we can achieve success.”

He claims the structure of primary care trusts discriminates against deaf people. PCTs are responsible for the local community but the number of deaf people within that community are sometimes so few that trusts are deterred from investing in interpreters or staff training.

Redfern says: “Deaf people don’t go to the doctor because they can’t communicate and doctors say they don’t need training because they don’t see enough deaf people.”

If the issue was looked at on a regional basis, PCTs in one region could pool resources and work with a greater number of deaf people in one area, he adds.

Deafness is invisible

Wendy Trent, team manager at Surrey Deaf Services and Sign Language Interpreting Team at Surrey social services department, experienced difficulties first-hand when she went into early labour. Trent is deaf herself and no sign language interpreters were available at such short notice, particularly as the birth was sooner than the usual four-week standby arrangement in place with the interpreting team. This meant a poor communication standard in terms of her and her baby’s health, she says.

In her professional capacity, Trent often comes into contact with clients who have found it difficult to access health services for help with making a complaint. The result is that some deaf people who cannot advocate for themselves end up contacting a social worker in Trent’s team for a non-social work related issue, because they are all BSL users. “As deafness is invisible and their views therefore unheard, deaf people are not receiving equal access to information and services as their hearing peers.”

To address this, Trent is linking up with local health services by participating in primary care trusts’ training forums held with GPs and their practice managers. She hopes to do the same with access to hospitals.

The RNID wants to see a widening use of existing technology, including visual alert displays and loop systems to avoid communication problems. This is commendable, says Redfern, but he warns: “The problem with any kind of equipment is that people get enthusiastic about installing it and then six months later someone asks what it is and nobody knows, because the one person who knew how to use it has left.”

Another recommendation in the report – the NHS to instigate training seminars to ensure all GP surgeries and hospitals have at least one front-line member of staff who has been formally trained in deaf awareness and practical communication skills – isn’t enough, he says.

“The Disability Discrimination Act talks about ‘reasonable adjustments’, but one hospital could employ 5,000 people. I would not say that one person is a reasonable adjustment.”

Survey results

The RNID and UK Council on Deafness surveyed 866 people. Findings include:

* More than one-third had been left unclear about their condition because of communication problems with their GP or a nurse.

* One-third of British Sign Language users were either unsure of the correct dosage of medication to take or had taken too much or too little because of communication problems.

* 24 per cent had missed at least one appointment because of poor communication. This had happened more than five times for 19 per cent.

* 42 per cent who visited hospital, but not for an emergency, found it difficult to communicate with NHS staff. This rose to 66 per cent
for BSL users.

* 70 per cent of BSL users who went to A&E units were not provided with a sign language interpreter.

"I felt humiliated"

Anne Wilson* was born profoundly deaf. She uses British Sign Language, but can lip-read and speak. Her first two children were born in hospital but she had a home birth for her third.

“Pregnancy gives you the biggest confrontation with being deaf. You see so many different professionals, so there are communication issues, but also everybody asks you about being deaf, why you are deaf, and even how you’ll look after the baby.

“When the baby is born, everyone asks whether the baby is deaf. I’ve found it degrading and humiliating. At home we only saw one midwife, and it was very relaxed.”

Wilson has often been ignored by health professionals who choose to talk to her husband, Mark,* who is not deaf. She recalls: “Once I was with a nurse who kept talking to him. I could lip-read her, so I just answered the questions she was asking him about me. Then she asked what the first day of my last period was. I said that I didn’t know, and she said ‘I am asking your husband’. My husband said I was the best person to ask, not him. She got angry with us and said we were being rude!”

*Not their real names