The 7 volunteers who are Lyme Disease Action (LDA) have changed the way the Department of Health and Public Health England view Lyme disease.
Four years ago Lyme disease was considered easy to diagnose and easy to treat and the charity was considered to be making an unnecessary, unscientific fuss. Now the uncertainties in diagnosis and treatment are more widely acknowledged and LDA is officially recognised as a reputable charity providing evidence based information to both the public and health professionals.
Says Stella Huyshe-Shires, Chair of Lyme Disease Action “We have managed to gain the trust of the Department of Health. It was a long time coming, but now everyone can use our information with confidence and we have the backing of Public Health England.”
Two strategies were employed to achieve this turnaround. The first was a project with the James Lind Alliance, now part of the National Institute of Health Research, through which the top priorities for research were defined. The project found that out of 81 questions raised by doctors and patients only 7 had known answers, the rest were true uncertainties requiring research. This was a project funded and organised by patients but the Department could not ignore the findings.
The second strategy was to achieve accreditation to NHS England’s Information Standard thus verifying the quality of LDA’s information, provided via the charity’s website and leaflets. No other organisation in the UK produces accredited information about all aspects of Lyme disease. This has been immensely helpful to patients and it has also been helpful to doctors, particularly GPs who have seen very little of this disease in the past but are now having to deal with an increase in cases.
LDA worked with the Royal College of General Practitioners, as a trusted partner, to produce an e-learning module on Lyme disease which is freely available to all health professionals. LDA leaflets are requested by NHS clinics across the country – a good measure of the status the charity has achieved.
Now the charity is working on a project to define just how many people are affected by this tick-borne disease. Specialist services are needed so GPs can refer complex cases – a call for this was supported by the House of Lords in the autumn. There is reluctance to invest in research or in a service without knowing how many people will benefit. “If no-one else will determine the true scale of the problem, then this small charity will.” says Stella Huyshe-Shires.
Ends/13th June 2016
- Essential information on ticks and Lyme disease is available for the public and for doctors on the LDA website https://www.lymediseaseaction.org.uk/ including links to Public Health England and NICE.
- The James Lind Alliance project outcome is described here https://www.lymediseaseaction.org.uk/what-we-are-doing/research/jla-process/
- The RCGP online training module on Lyme disease
- A summary of the House of Lords debate
Issued on behalf of Lyme Disease Action, a UK-registered charity striving for the prevention and treatment of Lyme disease and associated tick-borne diseases – www.lymediseaseaction.org.uk
For more information, or to speak to Stella Huyshe-Shires, the Chair of Lyme Disease Action, please contact the LDA press office firstname.lastname@example.org