A second Scottish Government round-table meeting on Lyme disease took place on 22nd June 2021 (10:30-12:00am).
Scottish Government policy makers:
- Louise Whyte (Policy Manager - Environmental Health and Infectious Diseases, Scottish Government)
- Laura McGlynn (Policy Officer, Scottish Government)
- Erin McCreadie (Bill Maker, Scottish Government)
- Dr. Gill Hawkins (Senior Medical Officer for Health Protection, Scottish Government)
Scottish ID consultants:
- Prof. Tom Evans (Consultant in Infectious Diseases, Professor in Molecular Microbiology - Glasgow Uni, Specialty Adviser on Infectious Diseases to the Chief Medical Officer, Scottish Government)
- Dr. Claire McGoldrick (Consultant Physician in Infectious Diseases, Monklands Hospital, NHS Lanarkshire)
- Dr. Sam Allen (Consultant Physician in Infectious Diseases, NHS Ayrshire)
- Dr. Sally Mavin (NHS, Acting Director of Scottish Lyme Disease and Tick-borne infections Reference Laboratory)
- Prof. Dominic Mellor (Professor of Epidemiology and Veterinary Public Health - Glasgow University, Chair of Health Protection Scotland Lyme sub-group)
- Prof. Jack Lambert (consultant, Dublin; trustee, Lyme Resource Centre)
- Prof. Christian Perronne (consultant, Paris)
- Prof. Gareth Tudor-Williams (consultant, London)
- Dr. Anne Cruikshank (GP; RCGP Lyme champion for 2019-20 Spotlight project; co-author of RCGP Lyme toolkit)
- Dr. Zahra Husain (GP; co-author of RCGP Lyme toolkit) Arlene Brailey (pharmacist; trustee, Lyme Resource Centre)
- Monica Wilde (herbalist, Bathgate)
- Dr. Janey Cringean (trustee, Lyme Resource Centre)
Issues of Lyme testing and treatment were discussed and research was touched upon. Janey outlined patients issues:
- patients cannot get a diagnosis after a tick bite because Lyme testing is limited and there is no testing for co-infections
- patients who remain ill after NICE recommended Lyme treatment are not given any help or further treatment
We were informed that information is being prepared for a public health campaign (but we questioned why it has not already happened).
Actions that came out of the meeting were:
- testing to be looked into
- sub-groups to be set up for professional education and awareness so that more can happen between meetings of the whole group
- Dominic Mellor and others to ask about reinstating the HPS Lyme sub-group, which is currently dormant
- Government will talk to the Scottish Gamekeepers Association and others about possible tick control
- Government to look into funding to survey patients
The last action was to survey patients. We wanted them to survey chronically ill patients but it looks like they will survey patients who are positive at Raigmore within the last 2 years. We are not happy with that. Getting a positive test means they have mounted an antibody response, and such patients are likely to have had early treatment. We are most bothered by the people who have not had early treatment and are really ill, those who get a negative test either because they don't have an antibody response or because they have other infections. In our experience, without treatment, it can take years from the bite for serious Lyme disease symptoms to develop. We feel that by tackling known positive cases over only a 2-year time period they are missing the point. To get the full picture, they need to look at people who are chronically ill after a tick bite even if they are Raigmore negative and they need to survey those bitten by a tick over a longer time period to see the full effect of delayed symptom onset.
We were also told that the Government does not fund research directly so our request for research other than surveys cannot be met.
The meeting was not recorded but it was minuted. The minutes of the first meeting will be distributed soon and we have permission to share them. Further meetings are promised.
Once again, we give huge heartfelt thanks to everyone who took part to allow patient issues to be brought to the attention of government.