Lyme Disease victims have been abandoned by the NHS, due to a lack of understanding; it is time the Government ended the chronic underfunding of diagnostic research.
Last week, Boris Johnson called for extra funding for the NHS, as part of a so called ‘Brexit dividend’. Whatever the merits, drawbacks or political motivations for this move, funding for our health service is a hot topic. It is a debate that will rage for years to come. Regardless of the outcome of a ‘Brexit dividend’ for health spending, the NHS urgently needs to research Lyme Disease, in terms of diagnosis and treatment. It must be open minded as to whether any of the chronic illnesses that people suffer from today are induced or contributed to by the disease.
This has long been a chronically underfunded area of our health service. The result of this lack of spending has been to leave thousands of patients feeling abandoned and ignored by the NHS. Abysmal understanding of the disease from doctors and nurses has triggered a severe sense of abandonment by many. The diseases’ victims have failed to receive the level and standards of care that we have come to expect from our NHS. This is not down to any sort of malicious intent, simply ignorance, although at senior level NHS and government level, I might use the word negligence.
Recently, UCL’s EPPI Centre published the results of a government commissioned inquiry, instigated at my behest. They found that a reliable diagnostic test for Lyme Disease does not exist in the UK. Furthermore, they reported the absence of an effective surveillance system for the disease, meaning we have no idea how many people are affected. This is an appalling state of affairs that I have long campaigned the government to address. Patients are being denied the help and assistance they so desperately need by a health service that doesn’t understand what’s wrong with them.
This is unfortunately an issue that my family and I have lived with, first hand, for years, having been diagnosed with the disease and experiencing it’s damaging effects. The experiences of my family leaves me wondering how many other families, not fortunate enough to have our means, are severely affected. I believe this a major health crisis, affecting people rich and poor, young and old across the country.
Due to the lack of an effective system for recognising, recording and treating this disease, we simply don’t know the true extent of the suffering. The EPPI Centre’s findings pointed to an increase in the number of people with the disease, using a carefully designed research method, as well as an underreporting of the disease.
I established Caudwell LymeCo in order to dramatically change the lives of Lyme patients, by raising awareness and ensuring that the Health Service dramatically improve their knowledge and service.
The government has a duty of care to it’s citizens to provide funding to combat this seriously growing public health problem. They have ignored this disease, to the detriment of sufferers, for far too long. No disease, syndrome or condition can possibly be dealt with effectively in the UK without the support and resources of the NHS. When the full might and ability of our health service is trained towards an illness, it can have a wonderfully positive effect for patients. This has been woefully absent in the case of Lyme Disease.
Myself and Caudwell LymeCo have jointly managed to move the plight of Lyme Disease sufferers firmly onto the radar screen of the general public, the health service and the government. Progress is being made, although unfortunately far too slowly to benefit many of today’s sufferers in the short term. Without concrete action from the Department of Health and NHS England, Lyme Disease will continue to go undiagnosed and untreated, leaving thousands feeling helpless.
The EPPI Centre have outlined the scale of the problem. It is a scandal that so few resources have been devoted to researching and understanding the disease. The Government owes it to those who have thus far received scant help from their health service to step up to the plate and properly invest NHS funds into Lyme Disease diagnostics. They face a growing public health crisis if they don’t.