Survey of People with Mild to Profound Hearing Loss

By Dr Gordon Brooks, Patient UK

The survey was conducted by Patient UK in conjunction with SignHealth in August/September 2009. If you'd like to leave your feedback on this subject, please go to our interactive forum.

The PUK Survey and its Results

Hearing Loss

It is estimated that around 9 million people in the UK experience hearing limitation, of which some 700,000 people have negligible or no hearing. The chance of developing hearing loss increases with age, with 70% of people over 70 years of age having some hearing loss.¹

A person's reduced hearing ability can make it more difficult for him/her to pick up information during normal conversation. So, additional time, care in interaction, and special methods of communication, such as signing (using, for example, British Sign Language), may be required to ensure information is exchanged accurately.

One place where poor communication can have serious consequences is during medical consultations. If symptoms are missed, or the use of drugs misunderstood, then this can adversely affect a patient's health.

In order to cope with their work load, GPs and other front line doctors, have to make best use of time available for consultations. So what, if any, effects do such time constraints and practice routines have on the ability of deaf patients to discuss medical problems with their doctors?

Patient UK, whose medical information is used across General Practice, set out to find out, in conjunction with SignHealth, a health care charity that specialises in assisting deaf people.

The Survey

An electronic survey was devised that contained questions about various aspects of communication patients might have with staff at their local health centre. An invitation for hearing impaired people to take part in the survey was placed on all health information pages across the Patient UK website for a six week period in August/ September 2009.

The Results

550 hearing impaired users of Patient UK, of which 525 lived in the UK or Ireland, completed the survey. People of all ages, from teenagers to the elderly, responded and the age/sex distribution of these responders was representative of the usage patterns of Patient UK itself. The results gathered from those living in the UK or Ireland (the study group) have been subjected to detailed analysis as below:

Degree of Hearing Loss

25% of the study group considered they had mild deafness. 64% considered themselves to be moderately deaf and 11% said they had profound deafness.1

Overall Communication

Overall, 56% of the study group felt that their hearing impairment had, from time to time, led to significant procedural or medical communication problems when attending surgery.

Extent of Procedural Problems at Surgery

The most common procedural things that went wrong were:

staff not facing the hearing impaired patient (21% of mild; 42% of moderate; 43% of profound) and
patients being called in for appointments and not hearing the call (16% of mild; 40% of moderate; 46% of profound)

The survey confirms that one of the greatest problems patients with hearing difficulties attending surgery face is knowing when to go into the consulting room to see the doctor if names are being called out. Sometimes this is because the surgery is unaware the patient has a hearing problem. Background noise can also mask the announcements. Some respondents had difficulty contacting the surgery in the first place. Some were too embarrassed to ask for things to be repeated. Others felt they were not accorded ordinary respect. One remarked he was 'deaf not stupid'. Busy receptionists can sometimes forgot they need to prompt deaf patients.²

Practical Things Surgeries do to Help Communication

When asked what the surgery does to assist patients attending for consultations, the most common responses across the study group were:

Having display boards to announce consultations (38%)
Fetching the patient from the waiting room (24%)

However, 26% of responders indicated by their comments that they felt their surgery did nothing special to help.²

Extent of Medical Communication Problems at Surgery

30% of the study group reported experiencing hearing related communication problems that were difficult to resolve when discussing their health. 8% of the responders reported having experienced serious communication problems on every surgery visit.

When these results were broken down by degree of hearing loss, it became clear that it was not just profoundly deaf patients who were experiencing medical communication problems at the surgery.

Whilst 36 (61%) of those who considered themselves to be profoundly deaf reported significant medical communication problems when attending the surgery, a much larger group of 105 people (31%) from the moderately hearing impaired group reported experiencing similar problems.

Medical Communication Problems Experienced

The types of medical communication problem experienced across the study group covered all aspects of the consultation process but included, for example:

The patient thinking the doctor has not understood the problem (11% of mild; 11% of moderate; 22% of profound)
The patient not finding out what they want to know (10% of mild; 13% of moderate; 19% of profound)
Medical matters discussed at too simple a level (7% of mild; 10% of moderate; 17% of profound)
Insufficient time to explain conditions and treatments (8% of mild; 13% of moderate; 17% of profound)
Confusion over medication dosage or side-effects (8% of mild; 8% of moderate; 19% of profound)
Confusion over follow-up appointments (5% of mild; 10% of moderate; 20% of profound)

Apart from specific medical issues, responders supplied further details about the sorts of things that have gone wrong for them during consultations. Some doctors and other medical staff talked softly; didn't speak clearly; had a strong accent or turned away from the patient, for example, to look at the computer. Some staff started off well then forgot the patient had a hearing problem part way through.²

Things Patients Found Improved Communication

All sub-groups in the study set reported that communication about medical matters was likely to be better if they saw a doctor/nurse who knew their medical history. Overall 67% thought seeing the same doctor worked well as opposed to 23% who thought it didn't matter.

Other things that patients thought worked ok or well when discussing medical matters:

Lip reading (30% of mild; 39% of moderate; 71% of profound)
Wearing a hearing aid (38% of mild; 76% of moderate; 56% of profound)
Taking a friend to help communicate (18% of mild; 27% of moderate; 49% of profound)
Writing questions on paper (17% of mild; 19% of moderate; 51% of profound)
Having a cochlear implant (1% of mild; 4% of moderate; 30% of profound)

Possible communication strategies that hadn't really been tried by members of the study group included (where the percentages indicate the strategy was reported as being ok or good):

Using a phrase book (1% of mild; 1% of moderate; 3% of profound) – 47% of profoundly hearing impaired said this didn't work for them.
Computer signing (2% of mild; 1% of moderate; 3% of profound) – 31% of profoundly deaf said this didn't work for them, 66% hadn't tried.
Video link to interpreter (1% of mild; 1% of moderate; 4% of profound) – 25% of profoundly deaf said this didn't work for them, 59% weren't aware and 71% hadn't tried.
Interpreter present (2% of mild; 4% of moderate; 19% of profound) – 25% of profoundly deaf said this didn't work for them, 56% hadn't tried, 69% hadn't asked.

Things Hearing Impaired Patients Felt Would Improve Communication about Medical Problems

The factors hearing impaired patients felt would substantially improve medical consultation communication in future were:

Medical staff facing the patient when speaking (71% of mild; 89% of moderate; 96% of profound)
Giving out printed information about medical topics (54% of mild; 67% of moderate; 64% of profound) – overall 11% of the study group reported that surgeries currently gave out printed information.
Wearing a hearing aid (perhaps remembering) (49% of mild; 78% of moderate; 38% of profound)
Being able to lip read (37% of mild; 56% of moderate; 61% of profound)
Bringing a friend to assist (25% of mild; 40% of moderate; 41% of profound)
Using a pen and paper (26% of mild; 32% of moderate; 44% of profound)

The majority of respondents with mild and moderate hearing didn't know about cochlear implants (63% of mild; 62% of moderate). 45% of the profoundly deaf knew about cochlear implants and the other 55% were split equally between thinking they would or would not work.

Lip Reading, Sign Language, Hearing Aids

The proportions of each group that could lip read, knew sign language, or used a hearing aid:

Lip reading (24% of mild; 32% of moderate; 76% of profound)
Sign language (5% of mild; 6% of moderate; 39% of profound) – mostly BSL where known
Hearing Aids (42% of mild; 84% of moderate; 67% of profound)

Notes on Translation Services and the Profoundly Deaf

The survey appears to reveal knowledge and training gaps concerning sign language and the use of human and other interpretation for the profoundly deaf:

39% of the profoundly deaf knew sign language.
The minority of profoundly deaf thought video link or computer signing would be of value. Quite a lot of this was probably due to lack of awareness.
Only 37% of profoundly deaf patients thought having an interpreter present in the consultation would help a lot. 20% didn't know. On the other hand, 41% thought bringing a friend would help.

Conclusions

The survey revealed significant problems patients with hearing loss have when visiting their surgery. These problems related to both procedural and medical matters and were brought to life in detailed comments.

Around of 30% of the 525 UK and Ireland hearing impaired people completing the survey reported experiencing 'difficult to resolve' hearing-related communication problems, when discussing their health. 8% of the responders reported these occurred on every surgery visit. Difficulties included missed symptoms, drug dose problems and particularly lack of time to exchange information. 64% of all responders recommended doctors give out written information to read later (only 11% of responders actually received written info).

Most health staff are probably well aware of the problems faced by the hearing impaired. But care needs to be taken to ensure the hearing impaired are identified and, as far as possible, given the same chance to exchange information about their health as those with good hearing. The survey suggests that in the bustle of routine surgery, the needs of the hearing impaired can be overlooked, and the resulting poor communication can lead to poor health care.

Two main groups have been identified:

1. The more numerous, moderately deaf who can be helped by simple minimal-cost measures such as:

Staff awareness – facing patients, not shouting, not looking at screen whilst talking, treating with respect ...
Providing suitable methods of appointment booking – online, text ...
Recording and updating appropriate hearing status on medical records – making use of clinical system for appointments, alerts and reminders
Fetching patients from waiting room or using display boards – removing barriers to communication at reception
Patients remembering to wear hearing aids
Giving out high quality information about medical matters to help defeat the information gap (this was asked for and would help all groups – although some profoundly deaf may have a lower reading age).
Having a policy on bringing friends/using interpreters
Offering patients information and help with lip reading, hearing aids and cochlear implants – where appropriate

2. There is a smaller, but equally important group, of profoundly deaf patients where education of patients and staff, and targeting of services, should improve the chances of efficient and cost-effective health communication:

The same measures as above – concerning training, respect and organisation
Education of patients about appropriateness and availability of translation facilities – so they know what is available, what might work and what they can ask for.
Education of medical staff so they also know what is available, how much it will cost, what might work and what they can offer patients. For example, on-line interpreting can often be arranged quickly and may well be cost-effective, but might be the last thing to be tried by clinical staff.
Education of both patients and medical staff should increase the efficiency with which appropriate services are asked for and delivered to those who need them.
Use of clinical systems to help with appointments, recording of needs and appropriate prompts to medical staff about services.
Offering training in BSL and deaf awareness where possible
Use of appropriate translation services.

References

1. See http://www.patient.co.uk/doctor/Deafness.htm for detailed background.
2. See survey responder comments and quotes below

The Author is grateful for feedback and comments supplied by SignHealth and members of the Patient UK medical authoring team.

Responder Comments and Quotes

Respect, Attitude, Training

"I have had problems all my life. I wish that people like me were treated properly and not made to feel inferior."

"I am 48 & you constantly feel embarrassed generally - when you don't hear properly and have to say pardon all the time..."

"Deaf not stupid!"

"I would say that 70% of the time, attention paid to deafness and the possible resulting confusion, misunderstanding etc, is woefully inadequate. Some staff are brilliant, more are not!"

"The assumption is that you are able to hear well... they further assume that if you don't respond that you weren't paying attention!!"

"In general, I don't think anyone really understands how my hearing loss affects everything to do with my health, particularly my mental health, and sometimes they appear to equate any slowness on my part as stupidity."

"Better general deaf awareness would help."

"I get fed up when people start talking loudly because they know I am deaf! It distorts lip movements and is not neccessary. I also hate people talking down to me as if I were a child or had learning difficulties just because I have a hearing problem!"

Making Appointments

"Despite the fact that I am completely deaf and do not use the phone, the surgery phoned up to make an appointment for me. Luckily my daughter was visting and answered the phone for me."

"I try to make appointments via the internet as understanding 'phone voices is extremely difficult so almost impossible to make appointments over the 'phone."

"I am not able to book an appointment over the telephone myself as I have difficulty with the phone. I have to visit the surgery personally, which might mean that I have to make two trips, the first to make the appointment and secondly to attend. Which might only be an hour or so between. Alternatively if available, my wife makes an appointment for me."

"Getting through on the phone due to text direct and their phone system not working well together."

"Although consultation with doctor has been fine, booking appointment has not."

Reception

"Talking loudly to me in reception and other patients in waiting room can hear my business"

"Privacy is compromised at Reception as staff inform whole waiting room of my reason for appointment"

"STAFF SHOUTING AT YOU. MOST OF US WHO HAVE HEARING DIFFICULTIES EARLIER THAN OLDER PEOPLE WHO LOSE THEIR HEARING LATE IN LIFE DO NOT NEED SHOUTING AT."

"Reception staff have to be made aware to face me and the need to write down important info for me."

"If my appointment over runs I complain every 10 minutes to ensure I have not been forgotten or I have missed an announcement."

"Some Reception staff and nurses talk much too fast and talk with their backs to me, or nurses have not the time or inclination to make themselves understood."

"If I appear anxious, some staff can be unpleasant. They do not understand how much it affects every aspect of my life. The reception staff stare at screens. I do not know whether they are talking to me, themselves, or each other. I cannot see their lips when they are behind screens."

"most staff do face me when talking to me, but ocassionally I have to ask people to turn towards me (away from the computer or desk) and make sure that I can lipread them."

"cannot hear what the receptionists say to me because there is a perspex screen in front of the reception area. I frequently cannot hear or understand foreign accents of receptionists or doctors due to their different syllable emphasis to the native English accent."

Staff Awareness

"Staff not appreciating that I am hard of hearing as my diction is perfect."

"No special arrangements are made, in fact I have to remind staff every time I visit that I suffer a hearing impairment"

"I always have to remind them"

"Better general deaf awareness would help."

Steps Taken by the Surgery

"My surgery doesn't do anything particular to help with my hearing difficulties but all staff are willing to try to talk clearly and repeat if necessary."

"They do nothing at all. Just make me miss appointments and wait for hours."

"I always ask to be taken to consultation as have been left sitting for one hour when I cannot hear a radio call. One has to be pro active and tell the reception staff that you are deaf every time you visit it is a pain but it is the only way to get service."

"My surgery do nothing to help with hearing impaired patients, in fact, they thought I was being awkward for asking for alternative methods of booking rather than having to find friends and family to call an automated telephone service."

"My surgery dioes not do anything on a regular basis. the receptionist may tell me when I am being called if she remebers or if still at her seat. The GP or nurse sometimes comes and fetches me. It is hit and miss with no consistency."

"Generally, doctors and society at large are useless at catering for deaf people. Often they invest in loops and other equipment but once the check box has been ticked they do not then use it. Its often turned off."

Announcements

"Maybe because I do not make a big deal of my hearing loss and if no-one else moves in the waiting room I guess it is for me or my name is called again and I will check with the reception staff as the tannoy system is not clear enough.I can usually make out what the doctor is saying."

"any changes of appointments and medications, they leave on answering machine cannot be heard or understood.If they want to change in advance prefer to receive by e-mail or by post. If it is immediate change can be texted via mobil."

"The key biggest issue for me is hearing when I am called for my consulatation in the waiting room. Too many time have I missed my slot or embarrassed myself when I thought they called my name when in fact it was someone else."

""My problems have only been mild but it's generally due to a busy reception area and not being able to hear what reception staff say or not hearing when they call me to go in. Then if I don't hear, they take the attitude that it's my fault and i have 'missed' my turn.""

"My surgery plays background music (they claim it is for patient confidentiality, which I think is stupid). I HATE having background music while listening to hear if my name is called."

Problems in the Consultation

"i always ask for the results and get them written down"

"I use the internet, then go back and ask more questions with phone consultations."

"No depth in discussion of problems.Very facile."

"Generally people do not know much about my illness and in some surgeries i have a different consultant every time with no knowledge of my medical history so they are useless as they have not even read the notes. Some are also very ignorant in some cases, even after telling them i need to lipread they do not look at me when talking. Any calls are handled by my mother, they do not call me."

"Many doctors do not turn away from their computer screens when they are talking to me forcing me to ask them to repeat what they have said. In such cases I have then been addressed as though I am feeble of mind; to the extent where the doctor has patted my hand and called me 'dear'. I have even been repremanded by one doctor for not wearing my hearing aid, even though I had an ear infection, as it made his 'job very difficult'. He should try sitting where I am."

"Tendency to be recording info on the computer rather than facing patient."

"use of computer screens means dc faces the computer i seldom see her face"

"GP's attention is sometimes good and at others he is possibly thinking of something else - unpredictable....spends much time looking at the computer monitor....he is too hurried and gives the feeling of being under pressure making him shorttempered"

"talking too fast. heavily accented, talking on my deaf side"

"I feel o kay as long as my wife comes with me as I don't always catch everything said to me at an appointment. If I had to manage alone I would need much more help than I am receiving at present."

"Things where so bad that I was forced to change GP Practise just under 12 months ago. when I brought someone into the appointment with me that person was addressed to and I was ignored. When I raised objections I was simply told that the time needed to ensure that I could fully inderstand and hear all that was being said was not available."

"there should be always a full explanation for a condition I have at the time of the appointment in the fullest sense. Simplistic diagnosis and in 'silence' is counter productive."

"Diffculty understanding what they said? and what's wrong? What medication? etc...."

"I always have to take my wife with me so that she can pass on to me what medication etc., I need to take. I would not hear them cvall me for an appointment, my wife tells me when we have to go in."

"Doctor soon forgets I'm deaf and drops voice"

"If I see a different doctor then it is more difficult, especially if the Doctors first language is not English. If i need to see a consultant i take my partner."

"A general lack of communication and confodence in bring ing things up."

"Staff facing me but when they are not sitting in front of a light source. Much easier to hear when there isn't any background noise. Not always possible, though."

Detection and Hearing Aids

"Less of a problem now I have hearing aids"

"At 76 I need and almost always wear my hearing aids when talking with others these days!"

"I WEAR A BAHA(BONE ANCHORED HEARING AID) AID AND THAT IS A BIG HELP"

"I have been told a hearing aid would not help me."

"I have a hearing aid, but don't find it helpful as I have long hair and it brushes against the sensors when I move - all I end up hearing is my hair!"

"I am trying to learn to lip read but find it difficult when people don' t face me when speaking to me. I am experiencing difficulties with my hearing aid (picks up every little background noise)"

"My hearing aid may help me more than i think but because I am young (relatively) to have hearing problems I feel very embarrased about using it."

Specific (Other) Improvements to Help the Hearing Impaired

"It would help if the staff including the doctor would remember I have a hearing loss and to face me and speak clearly - I often have to remind them and ask them to repeat information. A display board would also help as I don't always hear my name being called."

"having the doctor actually look at me so I could lip read them would be a start"

"Being faced by a speaker and the absence of other noises makes a big difference, also the speaker being patient and speaking slowly."

"These seem to be quite extreme - there are a lot of people who ara hard of hearing who would just appreciate clear speech from someone facing them"

"One has to insure that the practioner is facing you when speaking so that you have a chance to lip read. Impossible to read the back of their heads."

"And a text message number to actually be able to book an appointment"

"Having display boards would really help. I have missed 3 appointments as docs don't come and get me"

"I am hard of hearing (high pitched sounds all but gone). Noisy environments and foreign staff with very strong accents are the biggest problems"

"Staff looking at me when talking so I can lip read. Believing me when I explain I have a severe hearing loss instead of trying to prove that because I can hear some words I can therefore follow a full conversation. (My hearing loss isn't obvious but it's all in my notes). Avoiding questions that require me to answer "yes" or "no" and instead ask those which need a more detailed reply. If I have misunderstood it will be more obvious from my answers."

"One GP does give printed information, I've probably realised why he does this now ! He has recently reduced his consulting hours so I guess I might have to ask the younger GP's to provide written back up where appropriate"

"my disability should have been visible on my file. written in RED! ATTENTION PROFOUNDLY DEAF! PLEASE COME OUT!"

"Making sure that staff understand good communication skills is crucial. The receptionist and Practice nurse are as important as the Doctor. Too often receptionist look down at their notes rather than talk directly to me or other patients. Not rocket science."

"The doctor could use voice entry on computer so I could read what he is saying. I use this as an out reach volunteer so I know how well it works. It's a lot cheaper than interpreters."

"Best if I could be forthright with the GP and say "you are not listening to me"...."I dont understand the implications"....."you must know after all these years I respondeasily to small doses".....without giving offense."

"Sometimes it has been as if they believe I am tryign to be awkward, but whenever someone is flexibel and willing to let me speak a bout my needs, then things almost always go fine."

"It is good that this survey is being conducted - but some of the forced choice answers create difficulties - eg I can lipread a little but it would help to lipread more efficiently"

"For Staff not to cover there mouths when talking and also not walking away when speaking."

"Deaf awareness training for all staff I am expected to commuinicate with. hopefully helping them realise that no one can lip read a covered mouth and that background noise prevents the working of both implant and aid."

"Not being funny but it has always been difficult to read doctors handwriting. But typing to each other could be good I guess."

"Bringing a friend with me would be very uncomfortable as most medical matters should be private. With better hearing aids and the doctor speaking clearly, while facing patient would work for most people except those with almost complete deafness."

"The best advice would be for the surgery to have a 'T loop' installed as they have in most pharmacies, post offices & churches. This would solve all my problems in one."

"Surgery Reception windows or hatches not being placed in patient waiting areas. Staff (and patients) tend to raise their voices when speaking to deaf and elderly patients, then the whole waiting room hears your problems.... which may be rather "delicate" on that day rather than ones' deafness!"