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A moral scandal...



Date: Jan 2024


An article by Bishop Revd Christopher Herbert PhD

Visiting Professor of Christian Ethics at School of Medical Sciences, University of Surrey.



Lyme disease, caused by being bitten by a tick, is a horrible and exhausting illness...and it's made worse in the UK by the way the recording of the disease happens. GPs are not required to notify anyone if they have a patient who has been bitten by a tick. Instead, the numbers are calculated only if a doctor asks for a test to be carried out at national level...tests which are scientifically very difficult and which can result in false negatives and false positives. The Government claims that 849 people had Lyme disease in the UK in 2022.


Compare that figure with the statistics from the USA where over 300,000 people were diagnosed with the disease in 2022, or France, where over 50,000 were diagnosed in 2019.

 

Our Government's figures make no sense at all. In addition to the 849 figure they also offer an  'estimate' that there might be more than 2000 to 3000 new cases each year. But if they do not collect the proper data, how can they know whether or not their 'estimate' has any validity? Their estimate can only be a guess...this is not science, this is lazy, slap-dash thinking.


Let me put this starkly: how can France with a population of just over 67 million have 50,000 cases, and the United Kingdom with a similar population only have 859 cases?  


Believe me, this is not just a quibble about statistics. Numbers matter. When the numbers are incorrect, money for research is harder to come by, and worse, families with a child suffering from the disease are not taken seriously. They  have to fight every inch of the way to get a proper diagnosis because the disease is not seen as statistically significant. It is like battling with a pillow. Every punch you land just results in the pillow regaining its old shape... but missed or incorrect diagnoses can lead to the patient suffering from cardiac problems, severe joint pains, crippling headaches, and long-term exhaustion.  For children, in addition to the pains of the disease, it means totally disrupted education and considerable family stress; for adults it can mean unemployment, mental ill-health and a breakdown in relationships.


With climate change, ticks are on the increase, so, unless the Government acts, the situation for families will only get worse.


I raise a question: when will the Government make Lyme disease a notifiable illness?  

It would take very little effort to change the system and collect accurate statistics. Once those statistics are available, proper assessments of the scale of the problem can be made.


Until then, the current situation can only be described as an outrage and a moral scandal.


Bishop Christopher Herbert has a family member who has battled Lyme disease for many years. This article was previously published in 2023 in a number of newspapers in the UK, including The Times.


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