LDA has been working to alert politicians to the difficulties and injustices that many Lyme disease sufferers still face, and to the damage this is doing to the otherwise good reputation of the UK’s health services.
MPs cannot force medical opinion to change, but they can apply pressure to make the case for Lyme heard.
In April 2012, responsibility for Lyme disease was transferred from the Lyme Borreliosis Unit in Southampton to a completlely different team at the Rare and Imported Pathogens Laboratory (RIPL) in Porton Down in Wiltshire. Key staff at the Department of Health also changed, and this signalled a new approach from the authorities. Our commitment to good science has been recognised, and we are now in regular contact with the Dept of Health and RIPL continuing to work out how we can can move forward.
The team at RIPL have a great deal of expertise in infectious disease, but there are significant differences between Lyme disease and most other infections. Given how little anyone really knows, it is inevitably taking time to reach an informed consensus, and will take even longer to change entrenched ideas throughout the medical profession.
- Lyme disease is increasing in the UK
- It can be chronic and severe
- It is prone to misdiagnosis and lack of adequate treatment
- It is present across the UK and people don’t know about it
Action on Awareness
We hear a constant stream of unsolicited complaints from the public that their doctors either admit to knowing very little about Lyme disease or rule out the diagnosis on spurious grounds. For example:
- “There is no Lyme disease in our area.“
- “Babies under 1 year don’t get bitten.“
- “As you didn’t see a rash, it must be something else.”
- My GP wouldn’t test me, he said ”it is just a fashionable disease.”
- “Chronic Lyme doesn’t exist – if someone is just IgG positive, we don’t treat it.”
More effort must be made by health authorities to make doctors and the public aware of the basic facts of Lyme disease.
Public Health England have responded by issuing an awareness leaflet for GPs in 2013, a suggested referral pathway in 2014, and more public awareness in 2015 and 2016. The big nut, though, is still to crack – the consultants. This needs action by the doctors’ professional bodies.
Action on Guidelines
Public Health England has in the past recommended guidelines published by the Infectious Diseases Society of America. These guidelines have been widely criticised for failing to consider all the available evidence and are currently under review. We urgently need UK guidelines that take account of the full range of scientific evidence and medical opinion.
PHE responded by agreeing in October 2013 to set up a committee to draw up UK guidance as we announced in our November 2013 newsletter. However, at NHS England’s request, the process to develop a NICE clinical guideline for Lyme disease got underway in February 2016.
Action on Research
LDA has completed documentation of a large number of confirmed uncertainties in the diagnosis and treatment of Lyme disease. Funding is badly needed to form these into research proposals. Although there is some UK research on ticks, there are huge gaps in our knowledge of UK Lyme disease.
Our Lobby Work So Far
LDA Trustees have throughout the years been talking to our MPs, and we have been urging anyone who has been affected by Lyme disease to do the same. As a result we now have good support from a number of influential MPs. This has led to:
February 2007: An EDM put forward by Julia Goldsworthy MP got 80 signatures.
November 2007: Julia Goldsworthy MP hosted a meeting at Portcullis House. LDA trustees, a doctor experienced in treating Lyme, and several MPs attended.
February 2008: A second EDM by Julia Goldsworthy attracted 88 signatures.
November 2008: Hugo Swire MP organised a meeting at the House of Commons with interested parties from the Health Protection Agency, doctors and LDA trustees. Notes of this meeting are available.
2008 and 2009: Two online petitions were placed on the government’s ‘number ten’ website. Each gained around 2000 signatures.
2010: LDA had a meeting with the Parliamentary Under Secretary of State for Public Health.
2010 and 2011: Many patients wrote to their MPs, drawing attention to their cases. Several parliamentary questions were asked by a number of MPs, and these continue.
2012: LDA persuaded the Department of Health to participate as an observer at the James Lind Alliance final priority setting meeting.
2013: A meeting took place at the Department of Health with Departmental officials and a relationship was at last established.
2014: There has been continued constructive dialogue with the Department of Health.
2015: We issued a briefing for the House of Lords short debate taking place on October 22nd
2016: We provided a briefing for several MPs at a meeting on November 16th.