Falling Through the Gap Part 1 – Summary

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FALLING THROUGH THE GAP? : PART ONE

LYME DISEASE PREVENTION IN THE UK

The problems for communities at risk

 “Lyme disease (LD) is a multisystem and multistage infection caused by three species of tick-borne spirochetes . …LD has become the most common vector-borne disease in North America and Europe            ………Like other spirochetal infections, the signs and symptoms of LD occur in stages and involve a variety of tissues and organs, including the skin, joints, heart, and nervous system.”[1]

Lyme Disease patients´ experiences of health services in theUKare of concern as they feel the NHS has failed to deal with their illness. In addition to misdiagnosis, delayed treatment, and inadequate recognition of the complex of symptoms, representations have included poor patient treatment and victim blaming with their illness often labeled psychological, even delusional rather than physiological.

There is still a world-wide conflict, a lack of common recognition of Lyme, often described as the Lyme wars. Yet alongside this, there is a growing body of work that has a different view of these issues that is not currently being used to inform policy and practice[2] [3]. Despite, a rising rate of cases in the UK, central issues regarding prevention are being ignored by the state, with a focus on the controversies surrounding diagnosis and treatment of Lyme disease, and other tick-borne infections (TBI’s)[4].

Responsibility for proactive prevention is unclear as there is no clear public legislative responsibility engrained in public policy, to ensure planned tick protection or Lyme prevention efforts[5]. There are two key points regarding potential intervention; one is the knowledge and methods of tick-protection, to ensure ticks do not bite or when they do, are removed safely. The second is concerning prevention; how ‘first line advice’ is provided, by professionals such as GP’s.

Typically, the Health Protection Agency, issue a tick warning press release annually. Yet, stakeholders are only offered an ‘advice service’ and left to decide, themselves how to do tick protection. The useful toolkit[6] from the EU does not appear to be used extensively in the south-east or promoted by these agencies or networks  Local authorities do sometimes put information out in certain known hotspots and tourist centres, or on their own websites and there are notices in some parks or forests. But it is very unclear how wide the coverage is or how effective this is.

Approaches that only target those in traditional high risk groups, may not reach far enough. New research shows that one in five people diagnosed with Lyme became infected either in an allotment, park or garden and one in five patients was infected abroad. [7] These are not normally considered high risk areas or high risk activities.

A survey of GP’s showed that 72% reported using the wrong method of tick removal, of the surveyed councils, only 7% provided information to staff, and only 7% claimed to have information for the public on their website. [8]

Policy issues: who is responsible for Lyme disease prevention?

It is very difficult to locate the locus of responsibility for protecting the public against ticks. However, the CIEH currently believes that responsibility could lie with a central government agency such as the Health Protection Agency (HPA) (or perhaps the new ‘Public Health England’). [9] Yet the DOH website does not reveal any evidence of any public health initiatives at strategic levels. State agencies have not historically enabled a planned, forward looking, and proactive approach to tackling the (growing) threat to communities from Tick Borne Infection’s (TBIs). This is despite a corporate remit for the Health Protection Agency whose mission statement included;

‘Protecting People, Preventing Harm, Preparing for Threats’

 A previous HPO strategic review: ‘Getting Ahead of the Curve’, focused on dealing with ‘prevention, investigation and control’. Yet, its´ work seems only orientated towards sudden outbreaks of acute, communicable diseases.

There are also a set of questions to what extent tick protection and Lyme prevention is to do with health education (better awareness) as opposed to health protection.

The issues surrounding prevention appears to have slipped right off the agenda. Individuals, families, and communities of people affected by tick-borne infections are trying to reinstate them with support from some GPs and MPs in certain endemic areas. This community action can be seen as being proactive in tackling the problems, that state agencies have not yet admitted exist.

The ‘new’ public health and tick-borne illness

 In light of the new health systems that are emerging (that provide a new role for public health in local authorities) it may be a good time to look at these important issues. Lyme disease and TBI’s present a useful case study that could be used to future proof new systems. There are real worries however, that in the fast moving new health systems, that the problems for communities at risk of TBIs will, yet again, be low priority.

More work needs to be conducted to look at what kind of model should be used to drive any TBI prevention initiatives, and the kind of policy approach that could reinforce these efforts. Above all we should be aiming for ‘sustainable communication’ through community life, organisations and networks.

A community orientated, holistic approach could involve communities in change, but to be driven and supported by innovative policy at a state level. The national agencies, in contrast, have not provided a relevant or timely strategy for planned intervention, for the prevention of tick-borne infections.

Clearly these kinds of changes could provide opportunities for new structures to enable taking forward practical and problems solving approaches.Those which allow incorporation of the ideas of professional groups, who understand the issues on ‘ground level’ (such as the CIEH), are likely to be the most successful. The institutional response to these issues (according to patients) up till now has been at best inadequate, at worst, malfunctioning.

 The ‘real’ BIG society – Community action at its most proactive?

Once there is some clear institutional commitment to address tick protection communication, care need to be taken in deciding, what kind of health protection model would suit. A useful model would be one that is based on a ‘community development approach’ to health education, incorporating issues around good tick protection practices and risks from Lyme disease, as an essential part of prevention. This would also enable prompt diagnosis and treatment through earlier recognition. This would need to be embedded in local sources of communication and action (eg local Lyme support groups; and charities dealing with tick-borne infections) – such as utilizing local links and communication networks which already exist.

These are similar to ideas emerging from the RELU research project[10] that has been examining ‘communication of risks to countryside users’. They discuss the ‘4E’s model that includes encouraging (with clear information), engaging (involvement such as stakeholders), enabling (people do adopt ‘desired behaviour’) and exemplifying (leading by example) communicating about risks. More recently, RELU provided a link between this approach, and the coalition governments´ aims and objectives for the ‘Big Society’[11] agenda. But the questions are; who is going to be responsible, how this would be resourced, and what real commitment would be made?

BADA[12] for example, has raised money to have a tick-protection pack sent to every school in the UK. The state and its agencies need to ensure these packs are used and that information and awareness are spread and integrated into community life, local networks, and local activities. Recent research suggests this could be done without undue alarm or spoiling peoples’ enjoyment of the wild areas of the UK. Going beyond simply supplying information on tick protection practices would potentially reduce fear or distaste, not unilaterally raise fear. [13]

Local people and communities are building resources and knowledge, and already taking action themselves. This is mainly because the state has failed to do so.

The Future

The strategic policy context of preventing tick-borne infections needs to be fully reviewed. Which agencies and professionals carry responsibility for communicating risks needs to be established and how these risks are to be coordinated and managed should be addressed.

Efforts to develop policy led solutions need to be problem orientated and models used to guide such efforts need to be based on good practice, and to acknowledge and build on, the role of communities themselves in tick protection/ education efforts. In particular, they need to target local communities most at risk. Moving towards these kinds of practical and socially intelligent solutions cannot progress until the real nature of the problems for individuals, families and communities at risk are recognized. We need to progress beyond the ‘vilification’ of people with Lyme disease.

A much better dialogue, and debate, between the state and its agencies, communities and organisations of interest, needs to be created, in order for tick protection (and the prevention of Lyme disease) to work effectively. It is not clear that debate as even begun yet. An agenda needs to be constructed; a collaboration between the relevant professional groups, organisations with an interest or stake, and the local communities themselves.

Kate Bloor, LymeResearchUk –

email; lymeresearchuk@btinternet.com,