Volunteers Need To Be Given More Credit

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.

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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.

1. 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.
2. 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.
3. 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.

1. Aim to control your blood sugar levels as well as possible.
2. Make sure your blood pressure is monitored
3. Go for regular diabetes checks.
4. 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