Not long ago a friend of mine in London invited me to do a diabetes awareness session online for a WhatsApp group he is a member of with many of the contacts residing in Jamaica. This would mean a five or six-hour time difference but in principle losing my beauty sleep for a worthwhile cause close to my heart was never going to be of concern as I have done so periodically for other groups. I was really impressed with his enthusiasm and eagerness but heard nothing more whilst waiting on him to provide some available dates.
Recently he called and despite the WhatsApp group members being made aware of my biography as a diabetes ambassador for over eleven years, their concern was that I was not medically qualified!! He was rather disappointed in their stance and apologized profusely for wasting my time along with their level of thinking, adding it is their loss, considering how rampant type 2 diabetes is in Jamaica including some of the members of the particular WhatsApp group who have the medical condition.
That sets the background for this article as I have had enough of the uncalled for, unnecessary, snobbish and elitist approach as explained above which has got to stop. If it is not addressed nothing will change for the better as far as patient care and patient information is concerned.
Why does not having a medical qualification prevent a diabetes ambassador/advocate/activist from sharing their reality of living with the medical condition type 2 diabetes and more importantly never having taken any medication since diagnosis nearly nineteen years ago?
I am perplexed by their narrow-minded view. Do they realize how many organizations or groups jump at the opportunity of being offered an online or face to face free diabetes awareness session some as often as thrice each year? This mentality that some people have needs to be challenged as doctors are not the be-all and end-all. The well-known Jamaican proverb, ‘Wanti wanti cyaan getti, an getti getti nuh wanti’ readily springs to mind.’ Why should that or any other group stand in the way of allowing others to benefit from the knowledge and experience of a person living their life daily with type 2 diabetes? Perhaps I am missing something as all my power point slides are approved by the National Health Service (NHS) and start with a health disclaimer of not being a health care professional/practitioner which is the right and proper approach. Some organizers over the years have alongside my input made sure to include a doctor or diabetes specialist nurse to present the medical model which is a much better way rather than bluntly refuse to engage with willing volunteers wishing to share their lived experience.
Here are just a few of the many other examples that I have encountered and it is heartbreaking and soul destroying to have to deal with such poor judgement calls.
- Separately, three doctors in Jamaica whilst planning the trip prior to November of last year did not view it as appropriate for me to engage with their patients on diabetes awareness including prevention and managing this life threatening condition. That is precisely what I have been doing for over eleven years in England in diverse communities and indeed in person in Dominica, Canada and Barbados as well as online in the USA and parts of Africa. I hasten to add that the London School of Hygiene and Tropical Medicine as part of the Queen’s Diamond Jubilee Trust in 2018 invited me to deliver two diabetes awareness presentations to health delegates at a Caribbean diabetes symposium in Dominica and I was also chauffeured around the island to speak to communities on prevention and management of diabetes from a patient perspective. Diane Brathwaite, Clinical Director of the Barbados Diabetes Foundation who saw me on a webinar during the lockdown period, invited and hosted me in 2022 in that country during Diabetes Awareness Month where I engaged with several health care professionals and patients at various events.
- Despite being signposted to the Jamaica Diabetes Association after several unsuccessful attempts to engage with that charity, I was linked to someone well-known in the diabetes fraternity there who then did an e-introduction to at least three of the senior staff of the organization. To this day no one has bothered to respond which says it all.
- In Birmingham I proactively got in touch with a particular church as is my custom and having twice received no response, finally on the third occasion was informed in writing that they have enough medical doctors in the congregation so do not need my services.
To use the favourite expression of one of my other friends in London based on these three further examples, ‘What is that all about?’
Perhaps the Diabetes Association of Jamaica should contact the efficient and business-like organizers who impressed me immensely whilst in Jamaica with the way they rallied communities to attend events that I conducted in 7 parishes last November. An MP in one constituency came and applauded what I shared with some of his constituents on my diabetes journey.
In Britain there are Public Patient Involvement (PPI) representatives in healthcare, health service and health research of which I am one, and they play a pivotal role in aspects of policy and decision making. It is certainly not a case of parallel lines that never meet but a more collaborative meeting of minds and it amounts to What Works since it is beneficial to all. Simply put the patient voice is at the heart of the overall aim and it is not an ‘us and them’ situation.
For the past five years based on what I am often told at community events I have brought to the attention in several meetings with senior managers in both the NHS and Public Health England the poorly worded diabetes eye screening result letter sent to patients. Having attended top level meetings accompanied by the previous NHS Birmingham and Solihull Integrated Care System medical director along with the chief executive of Birmingham Community Health Care NHS Foundation Trust to raise these concerns there has still been no change. To put it in perspective below are the four points that are in the diabetes eye screening result letter.
- Aim to control your blood sugar levels as well as possible.
- Make sure your blood pressure is monitored
- Go for regular diabetes checks.
- Continue to attend your regular diabetic eye screening appointments.
I am tired of stating that putting in the result letter the need to eat a healthy well-balanced diet and do more movement or physical activity would certainly help to prevent blurred vision and blindness for people with diabetes. That is such a no-brainer and I get a raft of excuses from senior managers such as elderly people will fall over if that is put in the letter and national templates cannot be changed. As my grandmother used to say quoting from the Book of Daniel are they ‘The laws of the Medes and Persians that altereth not’?
Covid-19 and the murder of George Floyd in America brought in to focus the Black Lives Matter campaign highlighting racial disparities/inequalities. The health service in Britain was not immune from that after crystal clear evidence showed the unusually high number of African-Caribbean and Asian people who were admitted to intensive care units and died from this terrible disease. If that wasn’t a wakeup call, I don’t know what is?
The words equity, diversity and inclusion are banded about so often that they sometimes become meaningless as actions speak louder than words. However, the need to promote, manage, value, plan, think and act on these in an osmosis like manner still remain an ongoing challenge and a bone of contention. They should never, based on the overwhelming evidence remain an after-thought or tag-on approach anymore.
I leave these situations described above with you the readers of CaribDirect.com and please feel free to add your thoughts in the comments section on www.caribdirect.com
London born Tony Kelly of Jamaican parents grew up in Jamaica and returned to live in Birmingham in 1979.
He is a graduate of Mico Teachers’ College and taught in Kingston high schools prior to working for 30+ years as a middle manager in central and local government with an emphasis on equity, equality, diversity and inclusion. He has a masters’ degree in socio-legal studies from the university of Birmingham.
For over a decade Tony has volunteered as a diabetes ambassador firstly for Diabetes UK and now for the National Health Service – Birmingham and Solihull Clinical Commissioning Group. A multi-award winner doing a yearly average of 150 health and well-being events, locally, nationally and internationally focusing on type 2 diabetes. He was diagnosed with this medical condition 18 years ago. However with a combination of physical activity and diet he has never taken medication thus proving with the right mindset and discipline it can be achieved.
As a diabetes advocate/activist Tony will continue delivering the message of healthy options to readers of CaribDirect.com .
4 comments
4.5
If the medical person’s expertise is all that is needed to improve the life of a diabetic, everyone would be enjoying optimum lifestyle. Unfortunately it is not. A diabetic person who has lived a first class optimum lifestyle for over 10 years becomes an expert. Any seasoned medical person who genuinely cares about the ill diabetic person would welcome a diabetic advocate to speak and enhance the ill person’s lifestyle. Keep up the great work you do daily through the spoken or written words. Thank you
Thank you for continuing your excellent work in raising awareness about Type 2 Diabetes. When the message you deliver has be shown to be of benefit and is highly valued by those who chose to hear it, you know you are achieving the desired outcomes you seek. Therefore, never let the few who through poor communication, limited insight, and distorted perceptions put barriers in the delivery and sharing of your expertise. I think you will see that in doing what you do, you are chipping away at addressing the ‘uncalled for, unnecessary, snobbish and elitist approach’. I hope the positive outcomes you are achieving in patient care will keep you rising above ‘narrow-minded’ views.
It’s crazy that people don’t recognise the value of expertise by experience. Medical expertise is of course valuable but is enhanced in combination with understanding of peoples lived experiences…indeed clinicians listen and use patients experiences relayed to them to formulate the advice they give to others- so why not hear those expwriences first hand.