The June sun blazed outside the busy meeting room where I was holding Peterborough’s first ever deaf health forum. Inside, Peterborough’s deaf people had the opportunity to tell it like it is to NHS executives Sue Last and Ian Weller.
Person after person rose to their feet to talk about their experiences. For two hours, avoidable problem followed unnecessary crisis followed needless humiliation. It could have gone on and on. See the transcript here.
Interpreted into English and flashed on the screen in subtitles, our guests from the local clinical commissioning group learned just how dire the health service can be for deaf people.
These are real people’s stories. This really is life or death. Yes, that man said he didn’t know what medication to take. Yes, he didn’t have an interpreter at the GP for ten years. Yes, this just got real.
At the beginning of the meeting, I gave a brief introduction to healthcare, deaf people and the disastrous outcomes. Deaf people are likelier to die younger, twice as likely to have high blood pressure, four times more likely to be diabetic, more likely to be obese, more likely to suffer strokes or heart disease. Something has to be done. That’s why we were there.
Our colleagues from the NHS were shocked. This wasn’t on their radar. All these grievances aired and it was the first they’d heard of it. Deaf people don’t complain do they? All these issues and not even a statistic. Not even a starting point.
We’re at the beginning of a process here in Peterborough and Cambridgeshire. That meeting was the first step. There will be more opportunities for feedback and more forums. The next is in January when the NHS executives will report back on any measures they’ve taken to address the problems that were clearly and sometimes emotionally conveyed.
Meanwhile, the horror stories for deaf patients go on and on. In the past two weeks there have been four occasions where deaf patients have had serious procedures cancelled in our NHS area.
On one occasion, the patient had already starved himself overnight and taken the nasty pre-procedural medication. He found himself going home after hours and hours in the waiting room with no one able to say what was going to happen to him. He’s used to it.
That was just this week and that’s only what I found out about. It goes on and on.
I can understand why sign language users may be pessimistic about the likelihood of change or cynical about an NHS manager’s real intentions. These kind of problems have been going on for years and years and nobody seems to pay attention or nothing makes any difference.
In Cambridgeshire and Peterborough we’ve made a start. I’ll keep you posted.
Andy Palmer is the hearing father of a Deaf son, and is also a child of Deaf parents. He is Managing Director of the Cambridgeshire Deaf Association, runs Peterborough United’s deaf football teams and is Chairman of the Peterborough and District Deaf Children’s Society and teaches sign language in primary schools. Contact him on twitter @LC_AndyP
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sharrison64
July 27, 2015
Keep up the God work Andy.
Andy
July 27, 2015
Thank you!
katyjudd2013
July 27, 2015
Well done Andy, it’s great you got the CCG meeting with the deaf health forum. Please report back after your January meeting – would love to hear what progress has been made. Inequalities in healthcare will surely be tackled with a combination of legislation and increased Deaf awareness at all levels of the NHS. SignHealth’s ‘Prescriptions for Change’ are helpful (www.signhealth.org.uk), the NHS England Accessible information standard, the London Assembly Health Committee work on access to health services all good. Still, persistence and Deaf awareness needed. . . . .
Andy
July 27, 2015
I will check that you. Thank you for your interest and I will keep you updated! All the best
Sylvia webb
July 27, 2015
Andy, exactly the same happens to non-BSL deaf people, were they included?
Andy
July 27, 2015
Hello Sylvia. Thanks for the comment. Yes they were. We had speech to text as well as BSL interpreters at the meeting and people with a range of communication styles were in the audience.
Natalya D
July 27, 2015
Glad to see it was pan-deafness. There are many difficulties with how the NHS is structured which can make it very difficult for deaf people to access from confusing letters and long words, obsession with telephones and difficulty accessing communication support or appropriate communication/awareness while IN hospital/medical environments.
Hartmut
July 27, 2015
I do agree that deaf people are more prone to carry diseases being detected very late or too late. leading to premature deaths. Verifiable statistics don’t exist. I am speaking of the situation in Germany. Counting my classmates of 25 people in my small school for the deaf, graduating 1954 and 1956, 9 passed away already before the age of 65 years and 2 before age of 70.with 5 unknown, because these don’t show up in the events organized within the local Deaf community. Most of them (7) died due to alcoholism, and breast cancer. Except for 3, all are known to be leery to visit their physicians, because of communication difficulties and lack of interpreter services.
In the US, the situation now is just the opposite. Health care is very good, with deaf patients, even the poorly educated or uneducated immigrants, they and interpreters keep reminding the health professional always schedule the appointments around the availability of interpreters. There is even very little reluctance to hire a Deaf interpreter in metropolitan health centers, whenever called for. The health statistics here are much better than among my classmates in Germany.
In the US, there was an independent life insurance and annuity company for deaf people, named National Fraternal Society of the Deaf, founded by deaf people in the 1920’s and run by deaf people. It has folded a few years ago for lack of new enrollment among the young. I recall having read one or two annual report by the company, which boasted to have the lowest mortality rate in the industry and a better than average yields on their investments. This fact surprised me, knowing the dismal record among my classmates.