What is Effective Communication? It is a communication with people who are deaf or hard of hearing that is equitable to communication with persons without hearing loss.
My friend, Ted (not his real name, to protect his privacy) like me, lives in UK, has a hearing loss and uses Cochlear Implant to hear and he does not use the phone to have calls with strangers as he struggles to understand at times. Ted’s file at the GP surgery is flagged up as a deaf patient requiring face to face, text or email for any contacts.
In October this year, following recent long-distance flight, Ted went to A&E having symptoms of potential DVT. After long hours of investigations, it was confirmed– DVT (there was a blood clot) and he was given the medication to take home. At that point, he was not aware that the pharmacy at the hospital did not give him full course of medication, or that he should continue the treatment for min three months. He missed the information being tired after 9 hours in the A&E Department, so finished all the medication given at the hospital and did not think about it anymore. Recently, he was seriously unwell, and his son called the Ambulance. It was only during the Ambulance crew visit; they have realised that Ted was not given the right number of tablets to finish his treatment at the hospital and he should have been on repeat prescription from his GP.
There was a call from a hospital and his son had to assist his father during the call. Turned out, the Ambulance crew followed up on their visit and the doctor who saw Ted at A&E was alerted to the fact that Ted stopped his medication prematurely, putting his life in danger. My friend was asked to come to hospital immediately, where he received the follow up medication, and he was told, he has appointment booked before the end of the year.
In the next few days, a letter arrived from hospital, with the date and time of the telephone appointment. At this point, Ted was not sure to cry or laugh, given the obvious! He is still waiting to receive new appointment after asking his son to call the department to arrange alternative way of having a follow up appointment.
Ted also received number of calls to his mobile phone with no Caller ID, making it impossible to return a call using specialised Relay UK service or to ask someone to assist in making the call back. When he got home, he received a call at home number, which his son picked up, and it turned out, someone from the clinic was calling to check if Ted is taking medication and the person was annoyed that Ted was not responding to calls during the day. In the end, Ted’s family managed to resolve the situation, but what happened in my friend’s case is the catalogue of errors and clear discrimination, by failure to provide accommodations. In Ted’s case his right to effective and safe care fell short of NHS Accessible Information Standard (AIS) which is a legal requirement in England that all providers of NHS services must meet.
Deaf, deafened or hard of hearing patients should not be forced into having a telephone appointment despite having their communication preferences clearly marked. Unfortunately, UK does not have captioned calls service, which would help enormously in my friend’s ability to conduct his own affairs independently and with confidence that he is not missing important information. Until we get such service available in the UK, alternative ways of contact such as an email or SMS should be used. What is the point of AIS in collecting such information on patients when the responsible teams are not acting on them?
For those who don’t know what is captioned telephone service, here is the great post from Sarah Playford’s https://limpingchicken.com/2021/05/05/sarah-playforth-w, hat-a-captioned-telephone-service-could-offer-deaf-people/
Medical professionals need to take seriously the need to communicate effectively with patients who have hearing loss and ensure, that those patients are sent home with a written note with the treatment information and what the next steps are. Do not assume the patient understood everything, just because they are nodding. People with hearing loss often do not realise what they are missing but will nod in agreement anyway.
I highly recommend National Association of Deafened People excellent publication called “A guide to working with patients experiencing hearing loss” It provides simple tips for communicating with deaf and hard of hearing patients effectively which professionals can apply themselves.
My friend’s recovery is going well, however the level of stress he was subjected to is not acceptable, due to the failure to accommodate his communication access needs. We know, his story is not unique, many people with hearing loss have similar stories to share. What will it take to change the attitudes and to mainstream accessibility in healthcare services planning and design?
There are many doctors and nurses, providing excellent and safe care to patients, but unfortunately, we still have systemic issues that fail many deaf and hard of hearing patients. It is time for the NHS Accessible Information Standard to be more than just a piece of paper.
SeeHearInclusion 