Falling Through the Gap: Part 1

FALLING THROUGH THE GAP?   PART ONE – LYME DISEASE PREVENTION IN THE UK

‘Beyond absolute ‘wrong’ and absolute ‘right’ is a field – I will meet you there’ (unknown)

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]

Patients’ experiences of health services in the UK are of concern, since they feel the NHS has frequently failed to deal with their illness. Mis-diagnosis, delayed treatment, and inadequate ‘recognition’ of complex health selequae are common experiences, if support groups are to be believed which, in ‘general’ terms unfortunately, they are not.

Representations from patients and patient groups, via democratic and other processes, have not resulted in a full review of the problems, on the part of the state or its agencies. There is still a ‘world-wide conflict’ often described as the ’Lyme Wars’ but also a growing body of work that has a different view of these issues, which is not currently being used to inform policy and practice^[2],^[3].

However, ‘vilification’ of Lyme sufferers continues, and has reached a level and pitch that is ‘reminiscent’ of social attitudes levelled at HIV patients in the 1980s (i.e. unneccesary ‘victim blaming’) – as a recent article (by psychiatrists based on activities of a Polish support group) illustrates ^[4].

‘Members of the association induce one another with hypochondriac fantasies of a Disease, sometimes exceeding the limits of a delusion……It also leads to irrational social behaviour, which can only be described as induced hypochondria…..’

The Chief Medical Officer’s update of 2009 states:

‘Misinformation about Lyme Disease is readily available to patients via the internet and can lead them to seek inappropriate diagnosis and treatment.’

 The internet, media and/or demanding patients are blamed for the problems that are arising, against a backdrop of institutional denial and disinterest.  A rising rate of increase of cases in the UK does not appear to generate any strategic thinking with regard to dealing with these complex illnesses. There is concern that lack of any planned efforts in prevention is, itself, ’institutionally irrational behaviour‘. The central issues regarding prevention are ignored in preference of an ‘unhealthy’ focus on the controversies surrounding diagnosis and treatment of Lyme Disease and other TBIs ^[5] by the state.

In particular, responsibility for proactive prevention is unclear, and efforts by public agencies are not co-ordinated or adequate. The issues seem to fall through a ‘gap’ in policy and practice – there is no clear public legislative responsibility, ingrained in public policy, to ensure planned tick protection or Lyme prevention efforts[6].  There are several ‘points’ of potential intervention in prevention. One is the knowledge and methods of tick-protection, to ensure ticks do not bite or when they do, that they are removed safely. The second is the issue about how ‘first line advice’ is provided by professionals, such as GPs, and is about prevention through relevant and timely intervention.

Typically, the Health Protection Agency release yearly tick warnings, in one press release. Stakeholders are offered an ‘advice service’ and left to decide how to do ‘tick protection’. Consequently the use of information is limited and methods of communication are sometimes inadequate, sporadic, or patchy. There is little evidence of co-ordination or planning of communications about risks; e.g. a useful toolkit from the EU does not appear to be used extensively in the South-East or promoted by these agencies or networks. ^[7]

For example; at best, small items of information on websites (that the vast majority of people will not be exposed to) or at worst, no information at all.  Only 8 out of 14 national parks had any information at all on their websites in 2011.  The Forestry Commission allows cabins to be let out on its land, but the website has no information on ticks or risks.

Local authorities sometimes put information out in certain known ‘hot spots’ and tourist centres or on their own websites;  there are notices in some parks or forests.  But, it is very unclear how many people are reached through these rather ‘static’ and ‘sporadic’ communication methods. And, the coverage of risk groups with these efforts is ‘partial’ at the very best and many ‘hot spots’ are missed.

Approaches which only target those in ‘traditional’ high risk groups, may not ’reach’ far enough.  Lyme has actually been found in ticks in urban parks and in urban park workers for example, and cheap holidays abroad put many people at risk outside of the UK [8].

One in five of a group of UK and Irish patients had been infected abroad.  New information shows that about one in five people diagnosed with Lyme have been infected either in an allotment, park or garden[9]. These are places (and use of places) that are not normally considered ‘high risk areas’ or ‘high risk activities’.

It is not just the public who potentially get tick protection advice wrong; a survey of GPs showed that 72% reported using the wrong method of tick removal. The same paper also showed that amongst surveyed councils, only 7% provided information to staff, and only 7% claimed to have information for the public on their website. The charity (BADA), concerned with education on tick protection, also stated[10]:

‘Health and Safety in the workplace documents, and for visiting public….were also reviewed….it revealed a significant lack of information regarding hazards and risk avoidance, and out-dated and conflicting data…’ (2011)

The infection of Borrelia, from a tick bite, is still seen as being a ‘rare’ event, and this is sometimes used to explain why more communications on tick protection is not needed. The question is, what is real?  The risk of disease that is difficult or impossible to treat, following infection and, how much ‘accumulated morbidity’ is arising from this more minimalist approach. These are questions that the state is reluctant to ask, or to answer. The question we must ask is whether the communications systems we have in place to warn people about ticks and to protect them, is adequate and, if not, what system would be.

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 potentially lie with a central government agency such as the HPA (or perhaps the new ‘Public Health England’).[11]

A search of the DOH website does not reveal any evidence of any public health initiatives at strategic levels. State agencies, such as various bodies for public health, have not historically enabled a planned, forward looking, and proactive approach to tackling the (growing) threat to communities from Tick Borne Infections (TBIs).

This is despite a corporate remit for the Health Protection Agency , newly formed in 2002, whose mission statement included:

                        ‘Protecting People, Preventing Harm, Preparing for Threats’

And, a previous strategic review, in the form of ‘Getting Ahead of the Curve’ in that year that focused on:

‘a local health protection service….working with the NHS and local authorities to deliver specific functions relating to the prevention, investigation and control of infectious Disease…’

It appears that the HPA structures did not address these issues.  Their work appears to be orientated only towards ‘sudden outbreaks’ of acute, communicable diseases. This seems to fit with more ‘traditional’ ways of understanding ‘risks’ from infection, and prioritorising work.

There are also a set of questions as to what extent tick protection and Lyme prevention is to do with health education (which is to do with better health via better awareness) as opposed to ‘health protection’ as conceived by the HPA as ‘fire-fighting’ rapid response to sudden outbreaks. To quote a piece from the HPA’s website on the role of a local health protection officer:

‘Being a consultant in health protection means you’re at the sharp end of events. Working at the local level with agencies such as primary care trusts, local authorities and environmental health officers, we tackle outbreaks such as meningitis, TB and food poisoning.’

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 put the issues back there and there is support from some GPs and MPs in certain endemic areas. At times it seems as if this ‘community action’ is proactive in tackling problems which, state agencies have not yet admitted, exist.

The ‘new’ Public Health and Tick-borne illness

 In light of the new health systems which are emerging and which 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 TBIs present a useful case study which could be used to ‘future proof’ new systems.  It would be possible to examine how these problems could be dealt with, by new structures. There are real worries however, that in the ‘fast moving’ new health systems, that problems for communities at risk from TBIs will, yet again, be of low priority.

Since there has been no policy-orientated analysis for the UK in this area, and much more work needs to be done, there are important questions as to 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’ which ‘cascades’ through community life, organisations and networks.

As the WHO defines it, health education embedded into the heart of communities can be an empowering process which:

“comprise[s] consciously constructed opportunities for learning involving some form of communication designed to improve health literacy, including improving knowledge, and developing life skills which are conducive to individual and community health.”

This kind of approach dovetails well into a more community orientated ‘holistic’ approach that could involve communities in change but is 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.

As David Kidney, head of policy for the CIEH suggests (in the context of reinforcing, and developing the role of environmental health officers in emerging structures)[12]

‘We also call for a statutory duty for public health partners to co-operate, and for a mandate for health and wellbeing boards to receive information and advice from environmental health services, where there is not a direct environmental health representative on the board’

 Clearly these kinds of changes could provide opportunities for new structures to enable practical and problem solving approaches to be taken forward. Those that 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) until 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 needs to be taken in deciding what kind of ‘health protection’ model would suit. The specific challenges of preventing tick-borne infections go beyond the ‘behaviour’ of people, related to their exposure to ticks.

A useful model would be one that is based on a ‘community development approach’ to health education, incorporating issues around ‘recognition of good tick protection practices’, and ‘risks from Lyme Disease’ as an essential part of prevention. A ‘community based strategy’, would also enable communities to contribute to local initiatives.

This also needs to be embedded in local sources of communication and action (e.g. local Lyme support groups, and charities dealing with tick-borne infections) – such as local links and communication networks that already exist. This would also sit well with new proposed ‘local authority based’ public health structures.  Another advantage of this type of approach would be that it could tackle both ‘good tick protection’, as well as enabling people to understand enough about the illness to ensure more prompt diagnosis and treatment.

In general terms, this is not too dissimilar to ideas emerging from the RELU research project that has been examining ‘communication of risks to countryside users’. They discuss the ‘4Es 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 this research group provided a link between that approach, and ‘The Big Society’ (from the coalition), such as:

‘Speed (ing) local delivery of practical actions by securing involvement, and building ownership, commitment and motivation…’[13]

 They talk about ‘local action’ and ‘engaging local people’ via means such as ‘targeting specific local issues at an appropriate scale’ and ‘engage(ing) people from the onset, when challenges are first being aired…’

What is clear is that Local Authorities already have local links and networks, and are the location of professionals already communicating health messages (such as schools, environmental health officers, environmental groups and forums, community and voluntary sectors and groups etc ). This would be a good place to locate the co-ordination activities, having considerable experience of this kind of partnership working already. The big question is; who is going to be responsible; how this could be resourced; and, what real commitment would be made.

BADA[14] 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. The information and understanding must be spread ‘through’ communities, and become established in their minds, and become common practice. Knowledge must be integrated into the heart of community life, local networks, and local activities.

Recent research suggests this could be done without undue alarm or ‘spoiling’ people’s enjoyment of the wild areas of the UK even in the context where countryside users find tick protection messages unpleasant. [15]  However, going beyond simply supplying information to ‘normalisation’ of tick protection practices would potentially reduce fear or distaste, not unilaterally raise fear.

It is not just about putting leaflets in visitor centres or bits of information on a few websites – it’s about getting knowledge right into the ‘hearts and minds’ of communities. They can also help in perpetrating good practice and contributing to locally targeted efforts, above being passive recipients of more ‘static’ health protection messages.

There needs to be better recognition that communities themselves are a source of information and knowledge about risks, and that communication through and via community groups at local levels, is an essential ingredient.

The public should not simply be conceived as ‘lacking in knowledge’, or ‘prone to mis-information’, or ‘misguided practice’. Rather than being deficient in knowledge and needing ‘correction’ from professionals, local people and communities are building resources and knowledge and, already taking action themselves.

This is mainly because the state has not been able to effectively plan ahead. It’s not just about ‘changing behaviour’ but enabling communities to contribute – such as identifying hotspots, drawing in local groups, organisations and businesses that already form local networks.

The Future

It is the strategic policy context of preventing tick-borne infections that needs to be fully reviewed. We need to know which agencies and professionals carry responsibility for communicating risks, how they are to be co-ordinated and managed, and, how this will work with communities towards better knowledge of tick protection and removal practices. Efforts to develop policy led solutions need to be problem orientated and take into consideration patients and communities experiences, as well as the issues related to different ‘communities at risk’.

The models used to guide such efforts need to be based on good practice and should also acknowledge and build on the role of communities themselves in tick protection/education efforts. They need to target local communities most at risk, as well as those who are, by virtue of where they live, and/or because of specific behaviour or lifestyle.

Moving towards these kinds of practical and ‘socially intelligent solutions‘, has barely begun. It cannot progress until the real nature of the problems for individuals, families and communities at risk are recognised. ‘Vilification’ of people with Lyme Disease, (or their support groups), is not an effective strategy to tackle the growing risks from ticks, or Lyme Disease.

As an approach or response to the crisis, it is not rational, nor productive. It serves to ignore key problems and issues surrounding prevention of Lyme or other tick-borne infections in the community. At the same time it also ‘throws fuel on the fire’ of attitudes that result in undiagnosed chronically ill patients who cannot easily defend themselves. This includes some of the most vulnerable, such as those with low incomes; the rurally isolated; those who live with repeat or regular exposure to ticks; the young or very old; as well as those with co-morbid illness, atypical symptoms or living in non-endemic areas etc.

A much better dialogue and debate between the state and its agencies, as well as ‘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 has even begun yet.  An agenda is needed in which the community has a role in constructing. This needs to be a collaboration between relevant professional groups, organisations and stakeholders, as well as the local communities themselves.

Kate Bloor –  April 2012,  LymeResearchUk , lymeresearchuk@btopenworld.com

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