Introduction
In this chapter we will begin to focus in on some of the main issues that con- tribute to an understanding of how the various types of cancer support group that are involved with CAM in the UK actually work. We will explore the key characteristics of these organisations, and describe how these influence the way they function and evolve. We ask such questions as:
what types of people become involved with groups – both as organisers and regular members? In order to contextualise our analysis, we will begin by outlining the larger organisational structures within which various types of support group develop and operate, and how these structures have essen- tially led to the evolution of two distinctive organisational approaches. We will consider the ongoing and unavoidable influence that paradigmatic ten- sions between the biomedical community and CAM have had on the way these groups develop and function; tensions which influence everything from access to potential group members, through to the wording used in publicity material. Finally, we will focus more specifically on the role of patients within CAM-based groups and examine their rationales for involvement.
The self-help groups, networks and charities concerned with providing CAM services for cancer patients are eclectic (Kohn 1999). Organisations range from those that are essentially divisions of biomedical healthcare (such as groups based in oncology units or hospices), through to ‘grass- roots’ groups that have no formal affiliation with local health networks.
Although the plethora of group types and organisational approaches means that no two groups are exactly alike, and a truly representative data set would be very difficult to obtain, in this study we tried to include a reason- able cross-section of organisations. We concentrated on the most common types seen in UK cancer settings, and which the average cancer patient is likely to encounter as part of their routine treatment journey. Despite wide variations in approach, ethos, funding, membership base and so on, we argue that it is useful to identify two broad umbrella categories of support
group. Of course, these typologies are not absolute and points of intersec- tion inevitably occur. However, the differentiation acts as a valuable heuristic device. We have designated them Type 1 and Type 2.
Type 1 groups
These were essentially established organisations before branching out to provide CAM services. These groups are often formulated along ‘tradi- tional’ sociomedical lines and the incorporation of selected CAM therapies does not have any significant impact on their organisational direction or ethos. They are routinely affiliated to NHS hospitals or hospices, and are, therefore, likely to have a strong institutional grounding (i.e. they are fre- quently led or organised by medically trained individuals such as Macmillan nurses, and tend to engender high levels of medicalisation). The therapies on offer in these groups will almost always be of the kind that the biomedical community considers ‘safe’ (i.e. benign or harmless in their effects on the patient). Similarly, the CAM therapists affiliated to them will generally be subject to intense professional scrutiny, and be subordinate to medical personnel; only those considered to have appropriate credentials, and those willing to abide by this system of accreditation, will be allowed to access patients. In these group environments CAM plays a secondary role – both in relation to biomedical cancer care in general and in relation to the group itself. In this context it effectively becomes just one of a num- ber of discrete activities that group members may choose to be involved in.
As such, CAM therapies are not incorporated as part of a wider holistic agenda, and in this way the utilisation of CAM proceeds very much in terms of the biomedical organisational framework (and by extension, the biomedical perspective).
Type 2 groups
These groups, on the other hand, are set up with an overtly holistic agenda.
They are generally much smaller in terms of membership, less integrated into wider health networks and underfunded when compared with their NHS-affiliated partners. Their independence allows them to reflect more readily an underlying CAM/holistic ethos because CAM forms an integral part of what they do, and they are generally run and organised by CAM therapists. They still tend to be wary of their image and positioning in rela- tion to biomedicine; however, Type 2 groups tend to encourage a defined and separate ‘CAM’ identity which Type 1 groups do not usually have.
They may display a more liberal attitude towards the qualifications of the therapists they utilise, and similarly, the actual CAMs that are sanctioned may be far more esoteric and ‘Category 3’ (House of Lords 2000). This is not always the case, however, and at several of our Type 2 case study groups
the process of becoming a regular therapist for the group was extremely stringent, reflecting the well established nature of the group and the reputa- tion it wished to maintain.
Originators and organisers
The cornerstones of any support group are the individuals who take part (Damen et al.2000) – the ordinary members, the organisers and facilitators.
Much of the analysis of larger structural themes which follows will there- fore be grounded in an exploration of the perspectives, motivation and experience of these individuals. Starting a cancer support group, and partic- ularly one that is going to champion CAM, is a particularly challenging process. Individuals who take on what can be a very demanding, and at times, demoralising role, rarely appear to do so as the result of a purely abstract interest in the cancer field. It may be that they have actually had the disease themselves, or that the experience of seeing others going through an emotional and physical trauma stimulates them to act. In the context of CAM, it is often also the case that individuals who have experience of or with a given therapeutic modality – be this reiki healing, special diets, or any number of other CAM approaches – see what they can offer as some- how filling a therapeutic need which is not catered for by current biomedical cancer services. It is common, too, to find (CAM) therapists reporting that the process of engaging with cancer, and confronting it on a professional level, has the incidental effect of stimulating self-development processes that were hitherto unexplored.
I sat down with myself and thought, there is so much fear around this [cancer] and so much negativity around it that if I can’t tackle and face my own fear about it, then I have no business prescribing for people, because, if I’m coming from a fearful place then I am passing that on with my remedy as well and they’ll feel it in me – if I can’t handle my fear of it then I have no business anywhere near cancer patients. That’s my belief. So I sat down and thought, I think I can do this; I think I can release my fear; I think I can look at it as just another disease. Every per- son who has symptoms or who is ill has a dis-ease with themselves and cancer is just one of many. So I thought, I can put this into perspective – even with people who are suffering from cancer or MS or chronic fatigue or whatever – that they are just an individual out of balance with them- selves, and I thought I could do that, and once I thought I could do it, then I started to attract cancer patients, and cancer patients started booking into my clinic. I was put to the test and I found I could do it. I have cancer patients and I can talk to them about the positive side of the illness – that you don’t have to accept anyone’s prognosis, and the door is always open. As soon as you accept someone’s prognosis then the
door is closed. I believe that the body has such a tremendous potential for self-healing although I don’t always know how to tap into it or how to advise my patients to tap into it, and I don’t always know which way to point them or how to stimulate them, but ultimately the potential for self-healing I think is more tremendous than we imagine.
(Female support group originator and homeopath) At one level, then, the nature of cancer (i.e. a serious and possibly life- threatening disease) appears to attract a certain kind of CAM therapist, particularly in terms of the pathway which has led them to CAM, and the life narratives that underpin their progress along the route towards an active engagement with cancer care. A number of the therapists and organisers that we interviewed recounted how their connection to a group or to CAM activ- ities in general, was the result of serendipitous or ‘guided’ coincidence, something which resonates strongly with the spiritual aspects that underpin many CAM modalities. Some such CAM adherents – particularly those of an especially esoteric bent – frequently attributed significance and meaning to what outsiders may consider to be apparently random and coincidental, or indeed planned, events. At one case study group, for example, a therapist repeatedly expressed wonder and surprise at the way in which cancer patients kept ‘finding’ him. This was in spite of the fact that he operated out of a room in a cancer hospital, had a well established informal referral net- work and leaflets advertising his services were freely available to patients.
It is common, too, to find other key CAM stakeholders in the group environment (i.e. individuals who are not actually therapists, but who have had direct experience of dealing with cancer patients as a carer to a family member or friend). And as with therapists, it is often the process of first- hand engagement with people who are navigating their way through the trials of biomedical treatment which leads to the development (or entrench- ment) of dissatisfaction with aspects of the biomedical approach to cancer care, and their subsequent involvement in support group activities.
There was nothing – this would be about … around 1980–81, some- thing like that. And looking back I wonder how I coped as much as I did at the time. But, as they say, in those days you just did. There was no alternative. Unfortunately my sister did not survive. But this time [as a result of having cancer myself], I got thoroughly involved in support- ing other people. I know Sarah Smith lost her husband round about the same time as I lost my sister. We’d known each other for years. So we then were there to support each other through the loss as well as every- thing else, and being a very small [support] group you become friends as well as [a source of] support.
(Male support group organiser)
An important dynamic between CAM and cancer is that, as is the case with many other serious illnesses, CAM therapies are rarely the first port of call for patients; even those individuals who have a strong proclivity for CAM are very unlikely to reject biomedicine altogether once they are diagnosed (McGinnis 1990). It is far more common to find CAMs being utilised as a means of mitigating the side effects of chemotherapy or other forms of bio- medical cancer care. Thus, by the time individuals begin exploring the possibility of ‘alternatives’ they are usually well established on a biomedical treatment regimen. CAM, in this context, can therefore represent a ‘last resort’ in terms of therapeutic expectations, and this can engender a degree of alienation on the part of therapists. It may, for some therapists, lead to a determination to facilitate ‘choice’ (i.e. choice to utilise CAM) and support for patients – patients who they may perceive as being locked into a view of health and illness that is needlessly making matters worse for them.
Because I’d seen cancer patients and I suppose I was amazed at how a lot of them don’t think they’ve got choices. I think a lot of them are frightened and vulnerable. Vulnerable to what people say to them or suggest to them, and it seemed to me that if they are taking on the neg- ative things that people are saying to them – like the fear or ‘You must have chemo’, then they’d be susceptible to the positive too – like ‘You can look at a way of curing yourself’.
(Group originator and CAM therapist) Group evolution
Despite very real differences within and between group types, it is our con- tention that a recognisable developmental process is observable. Of course, as with the distinction between Type 1 and Type 2 groups, this is not meant to be seen as an inevitable and unfaltering process. But the three phases that we will outline do appear to resonate with the developmental process in our case study groups. It is also consistent, according to the experience of study participants, with the evolution of such groups across the board.
Phase 1: origins
Initially, as a group is beginning to develop there is a burst of enthusiasm.
This may originally have been generated as the result of a ‘final straw’ inci- dent, such as patients being frustrated by a lack of services. Equally, there may have been no negative reasons behind a group’s genesis; people may simply have had the desire to provide something that was not currently available. Negative experiences with health professionals were evident in our data, but despite the apparent antipathy between CAM and biomedical practitioners which is often reported, this dynamic was relatively rare.
Phase 1 is characterised by action: people are being approached to become involved and volunteer their services; premises are being found; the first batch of posters advertising the group is being put up, and so on.
I started talking to people, especially this person, my colleague who I met on a Friday night – you know – a cancer group would be a good idea. People could support themselves and eventually we’d get a bigger group, and you know how you do, you talk about it over coffee and throw it around a bit and as soon as you started talking about it, it changes its energy in that if you are just thinking about it its more like closed energy, but once you throw it out there it nearly takes its own energy. Somebody else heard us talking and they said it would be a good idea and somebody else heard – a good idea as well, and they had lots of questions. Where would you meet? How would you form the group? How would you structure the group and keep it positive?
Because what I didn’t want it to be like was ‘Let’s have a cup of tea and a biscuit and my cancer is bigger than your cancer, and my story is worse than your story ...’ That wouldn’t be a good energy, but how do you not let it become that without coming over as bossy or manipulat- ing or whatever. So I had lots of questions and I thought I had to find the answer to these before I started the group, but then eventually peo- ple were talking and people were associating my name, especially in [name of town] with this cancer group thing. So then we went over to meet people from the [name of town] Clinic [support group in neigh- bouring town] and I actually then challenged myself – do I need answers to these questions? Because there will always be a question, and do we always need to know how to do something? Why not have the courage to take a deep breath and say we are launching this group on 24 June at 1.30 p.m. and it’s called cancer support group and see what happens. So I decided to do that.
(Female group originator and CAM therapist) This initial enthusiasm can last for quite some time, but depending on the aspirations of the organisation (in terms of the kind of contact they seek, or need, from biomedical health networks) it is eventually replaced by a sec- ond phase – one often characterised by ‘struggle’.
Phase 2: struggle
At this point, even CAM-based groups that are ostensively no threat to biomedicine begin to find the reality of what they are attempting to do and the practicalities of doing it difficult to deal with. For a group organiser entering Phase 2, the initial enthusiasm and potential which characterised the early period of a group’s genesis can seem like a naïve dream. This is
particularly true of Type 2, or extreme grassroots organisations. Often, the individuals involved in starting these kinds of group are essentially living and breathing the CAM life world; their involvement as therapists or enthusiasts imbues every aspect of their lives, and it may be quite a shock to find that when they attempt to make connections with wider health net- works not everyone understands or appreciates their efforts. Even those organisations that follow all the bureaucratic conventions that will make them acceptable to established networks, and are perhaps only offering
‘harmless’ forms of CAM therapy such as healing or massage, find that it is much more difficult than they imagined to break through into a position where they can operate as an integrated part of the health community. GP surgeries and oncology departments may be reluctant to establish referral networks with a new and unknown group (not necessarily just because they are providing CAM of course, although this will immediately alienate many biomedical health professionals). And even groups that manage to become relatively successful in terms of membership and support can still find fundamental problems with access and engagement in mainstream environments frustrating.
I think really the connections depend upon the medical profession really. What we have discovered, because we did a little bit of an analy- sis last quarter, and we’ve done an awful lot of going round pushing stuff into doctors’ surgeries and this, that and the other, and we’ve said,
‘Look, the response from the doctors is not very good. So we are going to concentrate, so far as the GP world is concerned, more upon the nurses’. We thought there is a greater chance of getting a response from the nurses. As far as hospitals are concerned, again it depends on the area. I mean, for example, for many years we did have quite a good connection with [local hospital]. We have various departments that would do things for us, but it depends on the Sister really – who’s there.
The Breast Care ward in [name of hospital] and [name of hospital] say
‘yes, no problem at all’, so it depends very much on that. I suppose if you can establish a contact, you can keep it going, and it is often a per- sonal contact that counts.
(Female group organiser, Group 5) Organisers report finding that it is far more difficult to be ‘accepted’ and appreciated than they envisaged at the onset of the group. At this point, after perhaps a year or so, a significant number of groups begin to disinte- grate. This can happen for a variety of reasons, many of which relate to the practicalities of running any voluntary group: internal politics, originators or key members losing interest, and so on. In the groups that get past this stage, however, organisers and key members can move into a third phase, one characterised by a kind of resigned isolation.