Policy on Lyme Disease & Tick-Borne Infections in England & the UK
A Community Agenda
by Kate Bloor: Email Correspondence to: lymeresearchuk (AT) binternet.com
The aim of this paper is to raise issues about policy and practice, on the prevention and treatment of tick-borne infection (TBIs), in the UK. Its purpose is to enable future discussion about key issues and is aimed at broad professional audience. While it is not an academic paper, it does use some academic concepts and rationale. It is a follow on from a background article on the medical and political issues, surrounding Lyme disease and other tick-borne illnesses (footnote1). It is a position paper that questions the lack of organisational process in dealing with TBIs, a view that is different from that held by the statutory services and government.
1 http://www.healthmatters.org.uk/?p=64, Health Matters, April 2010.
This new paper is orientated towards two basic questions, ‘What has gone wrong?’, and ‘How it could be fixed’. It is concerned with policy (and practice) solutions to the public health ‘protection’ and health education issues. It also attempts to present an approach to tackling the consequences, when prevention of illness, or diagnosis procedures, fail. It is also concerned with the potential role of local action and the involvement of communities, which is considered essential in an effective delivery of health and tick protection information.
The previous government (before the new coalition of May 2010), did not have a clear strategic (or co-ordinated approach) to tackling the prevention of disease from ticks. It had no well-defined, stated aims or operational tasks and projects, or policy responses, to ticks and tick-borne infection. Agencies and organisations, within the state, such as strategic planning bodies for public health, (including the Department of Health, Health Protection Agency and the public health specialist structures), have not yet enabled a planned, forward looking, and proactive approach to tackling the growing threat to communities and population from Tick Borne Infection’s (TBIs).
An assumption is that ‘chronic Lyme’ is a mild self-limiting illness.
The approach of these agencies is ‘reactive’ rather than ‘proactive’, with the underlying assumption that no changes are needed to deal with TBIs, and the new medical challenge of more complex tick-borne infection-related illnesses. Another assumption that has become deeply embedded into policy, and practice (and possibly also research), is that ‘chronic Lyme’ is a mild self-limiting illness. It is also assumed that that is no specific treatment, other than that given for symptomatic relief or those therapies aimed at people with M.E (Myalgic Encephalopathy), irrespective of length of delay in treatment, types of complications/symptoms, and response to standard treatment following initial diagnosis.
The government’s agencies are ‘transfixed’ by the idea that tackling Lyme disease is primarily about dealing with ‘acute’ illness. These structures consider the treatment of Lyme infection and other tick-borne infections, primarily in the context of general practice or ‘first line care’. It is assumed that general practice advice provided on an individual basis to people who have been bitten and become ill, is the primary locus for diagnosis. Continuing care for those with ongoing illness, are also primarily cared for by GPs that do not often know how to advise or treat them.
Patients with chronic forms of illness from ticks ‘disappear’ into ‘generic’ categories like M.E
Since trends in tick related chronic illness (defined loosely here, as any long-term illness initiated by a TBI) are not being monitored, researched or measured in any way. No detailed knowledge of these types of cases, is available. What the state does not ‘see’ or ‘measure’ the state cannot ‘fix’ and takes no responsibility to do so. Referral of such cases, to M.E services (even when that is not considered by M.E doctors to be appropriate or useful) carries on. Patients with chronic forms of illness from ticks ‘disappear’ into ‘generic’ categories like M.E or various different ‘diagnostic categories’, including those whose illness has been aggravated by delays in treatment and/or misdiagnosis.
This paper looks at some of the potential ways in which the state and its agencies, could ‘work together’ with communities to tackle the risks, and effects, of tick-borne illness at ground level, as well as in ‘grand’ strategic policy. It is about the kind of approaches that could help government avoid unnecessary tests, or other medical and social expenses, by preventing misdiagnosis or late treatment, and therefore, chronic illness from TBIs. It presents a model that could be used as a starting point for discussion, to build a better strategic plan to protect the public from ticks, and TBIs, and thereby prevent illness.
While this paper focuses on England (as opposed to Scotland, Wales or Northern Ireland) the main points are also relevant to the rest of the UK. Many of the points made in this paper are relevant for areas where understanding and practice, is probably better.
The views presented in this paper are the author’s own, and do not reflect those of any organisations whose work is mentioned. The paper is based on an understanding of health and illness gained from working in medical (public health) research, undertaking academic research and study in relevant areas, and working in evidence-based policy-making in government. The internet has been chosen as the best means of disseminating this position paper because it makes it more accessible.
More work of this kind urgently needs to be undertaken for the UK
Since there has been little or no policy-orientated analysis or research, related to tick-borne infections in the UK published to date, this is an ‘uncharted’ area of policy-making and service delivery. More work of this kind urgently needs to be undertaken for the UK. It is hoped this article will enable more critical analysis and discussion to take place within UK professional groups and agencies, as well as organisations that have a vested interest (e.g. tourism, environmental, outdoor activities, landowners and land management, etc.).
There are many important questions to be asked, and debates that need to take place, about how to best organise and monitor the treatment of people with TBIs in the UK. These debates need to be more open, and therefore more accountable to patients and their carers, MPs and doctors. This is a controversial subject, has various dimensions, and some areas of uncertainty. If this article helps to generate a debate that is more open and deeper, to tackle some of this uncertainty, in a humane and problem-solving manner, it will have been a success.
Download FULL PDF at: LYME POLICY UK MARCH 2011
(Please note this is a long document, in sections as outlined below)
PART ONE: An action Model for strategic change to deal with tick-borne infections
PART TWO: Recent government’s policy approach to tackling the threats from tick-borne infections
PART THREE: A strategic approach to dealing with the growing threat of TBI’s to health – a community agenda :
A – Why a ‘Community Involvement’ approach is necessary.
B – Evidence-based approaches to local action on tick protection and Lyme prevention
C – Community Action at a Local Level – Learning from Good Practice
Combining Strategic Policy and Local Involvement – ‘The best of both worlds’: Discussion & Conclusion