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Welcome
This blog is for deaf people. It looks at health issues and it looks at health services. Most of all, we want you to give your story. Good GP? Never an interpreter booked? Call your name in the waiting room? Telling your story can help. The more examples – good and bad – the easier it is to change services. Click on the Comments link below to read what people have said, and to add your own views.
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#1 by Rowena Dean - April 7th, 2009 at 10:19
I’ve been gathering some stories for SignHealth about people’s access to healthcare. These are just some of them but we do want to hear more:
“Spent over an hour in GP waiting room. Turns out I had been called twice but completely missed it even though I told them I was deaf. Now my medical records say I am deaf and this has made a difference.”
“I’m just deaf, not simple minded.”
“I was given a morphine drip after a serious operation but no-one explained that I could press a button for an extra dose – I suffered unnecessary agony for nothing”
“My GP will not look at me when he’s speaking – he always turns to his computer screen or looks down at his notes – I could scream.”
#2 by Dave Stannage - April 15th, 2009 at 12:11
I would like to submit a horror story about one of our ex tenants. He had a dentist appointment (approx three years ago for a general check up.
Mr M was in the waiting room with a few other patients. He saw the rceptionist looking over towards him mouthing what he thought was his name. He assumed she was asking him to come through to see the dentist.
Mr M obliged and took his seat in the dentistt chair. As he was nervous he misread a lot of the lip movements of the dentist, who didn’t help the situation when he put on his mask.
After some preperation he then proceeded to administer an aneasthetic injection. Mr M knew sonething was wrong and challenged the dentist. explaining he was only here for a check up.
It was only at that point that the dentist realised that he had got the wrong patient.
The Dental Surgery admitted to the mistake and agreed to install a visual display screen to prevent this happening again.
#3 by Sue Gill - April 16th, 2009 at 13:53
I can think of a lot of situations ..
a young Mum whose doctor used her 9 year old son to explain that she had cervical cancer
A man of 92 who had had the same dr all his adult life, numerous operations that he had no idea what the ops were for but “ask my doctor, he knows all about it”
A gp who had a patient of 30 years standing, never used interpreters because they did not need one “she understands me perfectly” – patient response was “hes a nice man but he cant understand me, prescribed medication for diarrhoea when I had period problems” This lady was diabetic, had chronic arthritis, eye problems due to uncontrolled diabetes, cystic fibrosis, and heart problems. She had been injecting the same number of units of insulin for 19 years because it had never been explained to her using an interpreter, that she could vary the amount according to her blood sugar levels. Consequently her diabetes was never well controlled. When visiting the dr with her mother the dr would ask her mother how she was and not speak to her direct. And her mother would answer without reference to her daughter! This was a 40 year old woman whose mother was speaking for her. Perhaps not surprisingly, she died aged 52.
Another young mum had a baby born with the valves in its heart connected wrongly. The baby was rushed to Great Ormond Street..with..the grandmother because the mother was Deaf and would not be able to communicate. The mother was left in hospital wondering what was going on. Throughout the early years when there was a lot of surgical intervention and check ups etc grandma went to all the appointments. Mum couldnt tell you what was happening, because she didnt know. It was always “ask my mother, she knows”.
And my own experience where a consultant asked the interpreter to leave the room because “we dont need all these people in a consultation!”
One lady in hospital asked to use the fax machine to send a message to staff because there were problems with communication and she wanted support, and was refused permission to send the fax.
I have a fantastic GP practice who have accepted Deaf awareness training for the receptionists which makes life much easier, but still there are problems getting through to make appointments and I always call into the surtgery to make appointments face to face. In this day and age with technology it would surely be simple enough to set up a mobile number that could be used to text for appointments.
#4 by Ron - May 25th, 2009 at 13:28
This not a surprise at all as a deaf person myself and can get by with BSL on research know-one in who runs high street shops, local authorities etc understands hearing impairment if a deaf person who only uses sign language as communication when they do not have such staff training
#5 by Neil Patterson - June 20th, 2009 at 10:35
I do have nice GP – even reception can do basic sign language and GP always come out of their room to ask me and others too as made it more friendly as good for everyone.
It can be pain sometimes when you in need of emergency as this is the time you need help and interpreter. I hate going to accident and emergency and I would put off as long as possible before I am in pain. Because doctor, nurse and reception do not have the same thing what I like at GP. They seem to have no deaf awareness, no signing, no clue of how to communication with me. It is worse when I bought with kids. They would have doctor and 2 nurses just to trying communication with me and using my kids to “tell me” when I got angry about this, they think I am trouble maker the way I express my feeling. They treat me like I am stupid and made me felt I shouldn’t look after my kids. In the end, one of nurse on top of her voice in front of everyone in reception telling me ‘That i have to be very careful next time you naughty boy” I feel sorry for her with her dinosaur attitude eh!
I know this is very common theme all over UK. You would have thought they have been trained to dealt with various of different people.
#6 by Penny - July 9th, 2009 at 08:24
I think what I endured as a Deaf patient’s Deaf wife counts in the issue of stigma.
Recently my husband was taken to two hospitals. The first hospital, Deaf awareness wasn’t great (staff tend to speak loudly to him.. pointless, no-one ever asked how much he could hear minus hearing aids). But generally, attitudes and facing my husband when they talk was middling. Naturally, my hackles went into overdrive at certain mannerisms by some staff, but it wasn’t the time for ‘bite size Deaf Awareness’.
The second hospital – in the specialised ward – the initial experience literally, totally crushed our morale. The nurse jabbered away, it wasn’t a good day for her, even when I said to her ‘Please could you speak slowly, we are deaf’ – she literally ignored me, muttering ‘well he has to lipread ME’. It was incredibly difficult, her mouth patterns were tiny and gibberish. She wanted to justify her actions ‘He could lipread ME’. We endured 1.5 hours of that with sinking hearts whilst she filled in forms and mouthmouth to my husband (Deaf people in pain couldn’t be bothered to look up, but he had no choice). The surgeons came, relief at last, some were lipreadable and two used the right level – no shouting – in communicating with my husband, who was in great pain. I was wiped out with exhaustion and humilation.
After 5.5 weeks (hubby is home now) of hospital visits and feedback from hubby, I have seen the same old ‘stigma’ concerning deafness among staff. We got the ward sister to do a notice beside hubby’s bed that he was deaf, that if communications became difficult, pace speech or use notes.
I learnt one thing – never say ‘lipread’. I found attitudes were better when I said, “he needs to read you when you mouth your words clearly”. When the word ‘lipreading’ is thrust upon hearing people, there are all sorts of reactions (would like feedback from you all at ukhphl) which defeat the need to communicate clearly.
My daughter (a nurse) bristled when doctors did their rounds. ‘Mum, they really do shout at Dad!’ with a face signifying ‘They are so thick about Deaf people’.
Of course there were good examples – from the occupational therapy staff (naturally) and a couple of senior nurses.
I’ve been involved in training hearing people Deaf Awareness in part of my work for twenty years. It is a sobering fact little has changed in the mainstream, no matter how expert we are, we get reduced in situations like what has been described above.
I wished I had postcards with basic Deaf Awareness info with me, but when a family member’s ill you don’t think of those things.
Penny
#7 by Penny - July 9th, 2009 at 08:28
One PLUS point: the hospital has a PALS feedback form in its website. I complained about the bad experience with the nurse, and the PALS staff were fantastic. They responded ASAP, and alerted the ward.
Later one of the PALS staff offered to be a contact point if we had problems. That took a huge burden off my shoulders, for my husband’s sake.
But I always wondered, what if Deaf people with less literacy skills cope in that situation? Roll on PALS with videophone technology.
P
#8 by geri james - July 11th, 2009 at 14:13
Hello my name is Geri like a lot of people on this site i to have problems with my doctor if my lip speaker can not make it to the appointment with me i have to go on my own they will not write any thing down and also they do not look at me when they are talking to me as Penny said they ether look at the computer or look at my notes so now i dont go to the doctors unless i really need to thank you hope some one replys Geri
#9 by Rachel Mumba - September 2nd, 2009 at 10:26
I was really interested in everyone’s views. I was wondering if experiences here were the norm.
Signature want to improve public services for deaf service users. We want to hear about your experiences, good or bad, of:
· Doctor’s surgeries and hospitals;
· Local councils;
· Courts and the police;
· Colleges and schools.
We will then publish a set of principles, to help public services provide a better service for deaf people. To fill in the questionnaire at http://www.signature.org.uk/servicesconsultation.
#10 by Roger - October 19th, 2009 at 12:09
Ruth,
Unfortunately, the experiences described are very much the norm, and not just with healthcare either.
#11 by Roger - October 19th, 2009 at 13:31
Yes, Rachel, experiences expressed on the blog are very much the norm.
We have to fight every way to get the service we should be entitled to (i.e. just to get the equivalent service everyone else gets).
Our recent experiences at our Health Centre are a good example where we have to point staff in the right direction and get them to amend the error of their ways!
You may be aware that some surgeries will not accept telephone calls for appointments until 8am on the day.
Our own surgery has now introduced a new procedure where one has to make appointments for the MORNINg after 8am and appointments for the AFTERNOON at 2pm.
We had to find a CSW to call to make an afternoon/evening appointment, but were unable to get through for over 40minutes, when we eventually got through, all the afternoon appointments were fully booked!
We then went and made a complaint to the Practice Manager pointing out that it is difficult enough for Deaf people having to make telephone appointments once a day, never mind twice. As you can imagine, the Practice Manager had not considered this side of things but was surprised the receptionist hadn’t thought about how to assist us with our difficulty when we mentioned that calling would be difficult and we would need to ask someone to call. So she has now put on our records that because we are deaf we can make appointments for any time at any time – so it is worth flagging things up with your Practice Manager.
She also asked if we would be willing to provide feedback on our experiences at a future date for them to learn from their mistakes and improve things.
#12 by Jess - November 19th, 2009 at 00:07
Hi, I mayself am hearing. I’m a third year student nurse and am currently learning BSL 101. It is very basic but hopefully I’ll be able to help out more on the wards than some (stupid) nurses that think that shouting helps.
I hope that I’ll get to use my BSL effectively and make hospital stays that bit more comfortable.
#13 by Natalie - November 19th, 2009 at 10:15
Heyy,
I’m deaf myself, and i’m raised in a hearing world as i’m the only deaf person in my family.
I have a story for you.
I went to the hospital for a ear check up, my mum explained to the doctor that i’m deaf but have a cochlear implant so i can hear fairly well but the doctor was adamant to shout in my deaf ear- “just to see if your daughter has some hearing left.” Whereas my mum have told him several times that im PROFOUNDLY DEAF.
#14 by Natalie - November 19th, 2009 at 10:21
I’m deaf, NOT dumb. Think Equal Opps!! Treat deaf people the same but DON’T treat us like we are dumb. we are not, we just find it difficult!! It would be better if people have some awarness about deaf people and adjust things so deaf people will be able to communicate. it won’t kill you, you know!!
#15 by Neil Patterson - February 1st, 2010 at 14:30
Last week – I went to hospital in Birmingham. Even I had to inform them I am deaf and the importance of interpreter to be there as this is important appointment for me.
Interpreter wasn’t booked. The nurse asked me if I did bring family/friend? I told the nurse it is their responsibility and I do get fed up calling and calling them to make sure I have interpreter even they have “DEAF” on my record but still miss that!
However cos the interpreter was not there and I do not want to delay the appointment because I was in pain and I want to solve this so I had to resort to old fashioned pen and paper.
After 20 mins scribbling and I may need major surgery and this is why this is important to ensure I get the full information. When I walk out – I wasn’t sure and would have ask lots more questions but I didn’t want to write.
I will blog this to let you know what happens next.
Really it would be nice if I just had to mention my name and they booked interpreter automatically. Surely that is possible in nowaday. Then again it is NHS for you.
I am going to hospital today so should be interesting to see as last month I made complaint to one lady as in order to get in the building – you have to use the phone, state your name and get in. I hate this moment feeling helpless and having to ask other people to help me. Will it improved this time???
#16 by Annoymous - February 4th, 2010 at 21:57
A week ago, I went to see the doctor that i have a urine problem. My urine sample has been sent it to the lab. The Surgery asked me to ring back after one week for result.
Until today I rang the surgery as they asked me to do it again because the result is not right. Why did they didnt contacted me earlier rather than today! I told the surgery that they should be contacted my text mobile.
Unfortunately that they are not allowed to contact me by a mobile text as they only need my telephone number.
I am very worried if my result is bad news but how they contact me in right time rather than delaying. or doctor need me to come .
I couldn’t believe that the Surgery said they found it is very difficult to contact me as a deaf person and too complicate with technical like typetalk and text as they dont understand how to do it! I am so annoyed about it.
My previous experience that I was in bad traffic as I was running very late to go see doctor but I can’t ring the surgery by my mobile. I had to text my brother then he phoned the surgery behalf of me. I was so embrarrased that my brother asked me what is wrong and started worried about me. I told him back it was for my smear test. what a embrarrased! I rather to use my mobile as more independence without relying on other people!
#17 by Neil Patterson - February 18th, 2010 at 13:37
Linked to my comment 1st Feb. The door and phone are still there. As usual they are deaf to my complaint!
named and shamed award to solihull hospital.
#18 by Surraya - March 1st, 2010 at 14:48
Hi Neil
I’m from the communications team at Heart of England NHS Foundation Trust, which runs Solihull Hospital. I’m sorry to hear you’ve had two bad experiences at Solihull – have you contacted someone in PALS, who should be able to help with your complaint? They can be contacted via email on pals@heartofengland.nhs.uk.nhs.uk
#19 by Surraya - March 1st, 2010 at 15:29
Sorry, that should read pals@heartofengland.nhs.uk
#20 by Annie Yaxley - March 12th, 2010 at 11:59
My brother-in-law died at 41 as a result of not being given advice via a deaf communicator and I am still so angry about it!
He had broken his leg and had been put in plaster on New Years Eve. Embaressed that it had happened after he had had a few drinks, he asked my sister and his daughters not to tell me! As I lived away it wasn’t hard to keep it from me. Unfortunately he had bad varicose viens in that leg and one week before the plaster was due to be removed he suffered a pulmonary embolism and died. Had it been emphasised to him the importance of getting help if he experienced pain he would still be alive today. The hospital relied on his deaf mate to convey instuctions! I sat with him while they switched the life support machine off and have to say I will live with the trauma of that for the rest of my life. My sister who is also deaf and their beautiful daughters have had to live with the thought that they could have perhaps prevented him dying!
#21 by Deaf/occupational health - March 22nd, 2010 at 23:17
Please could you tell me what is Occupation Health relating employment?
Is Occupation Helath working for deaf people? Will Occupation Health professional tell a deaf woman’s employer that she is not fit for her job? Why?
If the deaf person is referred to Occupation Health, does it mean it is a risk for her to lose her job at the end.
#22 by Hearing Direct - April 8th, 2010 at 09:53
Having red some comments here, it’s clear the public sector in particular could do much better in providing services for the deaf and for the hearing impaired. It is important for organisations such as SignHealth to keep this issue on the daily agenda and for the community to share views.
#23 by Maureen - April 15th, 2010 at 14:41
Male deaf went for a hospital appt re his water work problem- a LADY interpreter was booked! Red faces all round!
Specialist Doctor refused to write things down- his reason was ” I havent got time to write things down” – at that point I wrote “ok but I will report you” he changed his tune and start to write notes
#24 by Mark Fisher - April 16th, 2010 at 15:13
Hi all, visit Siemens.co.uk/hearing and download their ‘Face of Siemens’ form if you’re interested in becoming a hearing ambassador! Entrants simply have to describe the reasons they are suited to the role and list the ‘Sounds of Life’.
#25 by Rowena Dean - April 19th, 2010 at 16:16
Occupational Health is a service which is used by lots of organisations. It is used to check that someone is fit for a particular job or it might be used to see if someone is ready to come back to work after an accident or illness. It should not be seen as a threat by deaf people.
Occupational Health can also look at the risks in the workplace and advise employers about how they organise their workplace so it’s safe.
I hope this helps.
#26 by admin - April 19th, 2010 at 16:28
Well done for saying you would report the doctor. A lot of times, doctors say they will not write things down. This is very bad. If a doctor says they will not write things down, then follow this example. Writing things down is ‘reasonable adjustment’ under the Disability Discrimination Act. A Deaf patient can say written notes are not good enough – but a doctor cannot. It would, sometimes, be a good idea for doctors to write things down for Deaf and hearing patients!
#27 by admin - April 19th, 2010 at 16:33
Sorry for not replying sooner. I missed your comment. Occupational Health can advise an employer about ‘adjustments’. For example, the Deaf person may need access to a mobile phone, or some procedures may have to be different. But the job should not be at risk. Employer would need to say why ‘adjustments’ are not possible. Occupational health should – really – be useful in getting improvements. If it looks like they are trying to sack someone then SignHealth’s Advocacy Service might be able to help.
#28 by Neil Patterson - April 22nd, 2010 at 16:15
#20 by Annie Yaxley – that is sad but common stories amongst deaf world – I remember deaf guy who had heart attack and went to hospital but because of no clear communication or book emergency interpreter. He died. All the doctor need to clear information (the pain where etc) and I am sure if he had communication support, he would be alive now.
#29 by Jack - August 11th, 2010 at 20:41
I am hard of hearing and can’t us the telephone and need a office job badly, help any one.
#30 by Rinkoo Barpaga - August 27th, 2010 at 12:57
Have you had any bad experiences with the NHS?
Have you ever had any form of communication breakdown at / with the hospital?
Lack of Interpreters or bad quality Interpreters being provided?
Have you felt misinformed or left an appointment confused due to the language barriers?
Whatever your NHS story is… See Hear want to know.
Please feel free email me Rinkoo.Barpaga@bbc.co.uk
#31 by Rinkoo Barpaga - August 27th, 2010 at 16:02
Dear Sir or Madam,
My name is Rinkoo Barpaga and I work for the BBC, ‘See Hear’ team as a Researcher.
We are looking for Deaf people who have had any bad experiences with the NHS?
e.g., Communication difficulties between Deaf patient and Doctors, Nurses or even the Receptionist? Lack of Interpreters being provided or Deaf patient feeling misinformed or confused due to the language barriers?
Do you know any people who would be happy to feedback their experiences to us? Or if you know of or have any stories but don’t wont to disclose personal details than a reconstruction of the story can be made?
All stories will be kept confidential.
Please feel free to ask me anything.
Looking forward to hearing from you
Rinkoo Barpaga