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An Holistic Approach to Immune-Related Illnesses
listed in immune function, originally published in issue 51 - April 2000
One of the guiding principles of an holistic approach to health is to respond "to the person as a whole (body, mind and spirit) within the context of their environment (family, culture and ecology)."[1]
This is perhaps particularly important when the people being treated are facing illnesses that are potentially life-threatening and where there is no clear orthodox 'cure'.
But how often is this possible with the current state of play within complementary therapies? Access to these therapies is mainly on a paid basis. Many practitioners work on their own and patients try one thing and then another with little on-going continuity of care.
The charity 'Immune Development Trust' (IDT) was established in 1988 by a group of complementary practitioners to provide holistic care free of charge to people with immune-related conditions, namely cancer, HIV, multiple sclerosis and systemic lupus erythematosus.
Over the years, a model of care has been developed which goes some considerable way to addressing the guiding principles of holism.
Very importantly, IDT has significant links with the orthodox medical establishment. It receives funding from health authorities and runs a number of satellite clinics in NHS hospitals.
The model of care at IDT has developed organically over the years (a process of setting up services, trying them out and then modifying them until they run smoothly), all the while being dependent on piecemeal funding. In 1996, the main clinic moved into magnificent premises in Islington, making the vision of holistic care more of a reality.
In this article, rather than discussing specific treatments for immune-related illnesses, I will outline this model, as I believe that this is at the core of IDT's success. I will attempt to do this from an holistic viewpoint.
In 1998, I was invited to review the service provision at IDT from the perspective of clients, practitioners, volunteers and staff. In order to be able to do this effectively, I wanted to develop questions that incorporated an holistic view. I hit upon using the NLP (neuro-linguistic programming) model of Neuro-Logical levels. This model was outlined by one of NLP's leading developers, Robert Dilts. It suggests a way of thinking about the way in which people act, and I have found it very useful, particularly when thinking about health, both on an individual and on an organisational level. Processes of change and healing involve the interaction of these different levels of experience, and I have found it a useful way of mapping out an holistic approach to health.
Using this model, I developed a set of questions to assess the services offered by IDT. My aim was to identify whether any of the levels were problematic from the perspective of clients, practitioners and staff. With this information, I could then go on to suggest ways in which the model of care could be improved. In fact, there were few, if any, difficulties for anyone at any level.
I want now to outline the IDT model of healthcare for people with immune-related illnesses and relate it to the Neuro-Logical levels. I have also incorporated some of the comments made during my assessment last year.
Table1: The Neuro-Logical Levels2 |
||||
Question | Neuro-LogicalLevel | Application | Related MedicalSystem | Related HolisticLevel |
Who/what else? | Spiritual | Transmission | Holographic – being part of a larger system | Spirit |
Who Am I? WHo? |
Identity | Mission – vision and purpose | Immune & endocrine system – deep lifesustaining functions | Soul |
My Belief system Why? |
Beliefs | Permission & Motivation | Autonomic nervous system – uncon- sciousresponses (e.g. heart rate, pupil dilation) | Heart |
My Capabilities How? |
Capabilities | Direction | Cortical systems – semi conscious activities(e.g. eye movements, posture) | Mind |
What I Do What? |
Behaviours | Actions | Motor systems – conscious actions | Body |
My Environment Where/when? |
Environment | Reactions | Peripheral Nervous system – sensations andreflex reactions |
Environment
This level is made up of factors such as surroundings, building, therapy room, noise level, etc. and relates to the iof healing; that which contributes to the 'healing environment'.
IDT is currently located close to central London in specifically converted premises in Islington. It has excellent public transport links and is set back from the main road. Considerable thought and effort went into the interiors, including an initial Feng Shui consultation.
Pictures adorn the walls and the consulting rooms are spacious and airy, all with natural daylight. The waiting room is away from the main reception, has comfortable seating, quiet music and has recently had a fish tank installed. Plants also feature throughout the building. For those who are too ill to attend the IDT clinic, a home visiting service is available if they are referred through social services or a nursing team.
Comments about the environment from clients included "a nurturing safe space", "feels like a haven", "as good as it gets". The general feeling amongst everyone involved was that the environment at IDT contributed greatly to his or her own sense of well-being. It was a vital part of the healing process.
Behaviour
Behaviour has to do with the specific behavioural activities that people experience and become involved with. This involves the what of healing and relates to healing of the body.
As I was looking at the organisation particularly, I mainly focused on the behaviours being presented to people when they were at IDT.
Staff, volunteers and practitioners working at IDT are required to sign an 'Agreement for Provision of Voluntary Service' which commits them to upholding IDT's code of ethics and practice.[3] This is not an executive directive to be adhered to, but a document that emerged from what people believe and practise.
The first three guiding ethical principles outlined in this document which relate to behaviours are:
1. IDT shall be an environment of integrity, impartiality and respect for all individuals, and all professional relationships and interactions shall be ethical and non-exploitative;
2. There shall be an atmosphere of mutual trust and respect among all Workers and Clients;
3. All individuals shall be able to expect to feel physically and emotionally safe when using IDT services or working for IDT in either a paid or unpaid capacity.
These principles are particularly important for people who face life-threatening conditions or considerable stigma and who may be feeling very vulnerable.
Comments about these behaviours from clients included "warm, friendly and unthreatening", "professionalism with heart" and "willing to give support without sending you round in circles". There was general agreement that IDT managed to hold a balance between professionalism and a personal approach that was very different from that experienced by many clients at hospitals.
Capabilities
Capabilities have to do with the mental strategies and maps that people develop to guide their specific behaviours. Simply engaging in behaviours does not ensure that healing will take place. It involves the how of healing and relates to the healing of the mind.
IDT is committed to furthering the capabilities and skills of all those involved with the organisation – clients, practitioners, staff and volunteers.
IDT offers a range of therapeutic workshops and classes, aimed at teaching skills for maintaining good health. These include regular, year-round yoga and t'ai chi classes, and occasional workshops in basic shiatsu and massage skills, meditation techniques, DIY aromatherapy, and so on. This programme is backed up by a wide range of one-to-one complementary therapies.
In response to this, IDT developed a 'Pathways to Health' course, a ten-week introductory course about complementary approaches to health. This was made up of experiential seminars on a variety of approaches including meditation, massage, homoeopathy, NLP and aromatherapy. IDT now works in partnership with the City and Islington Adult Education College, which has provided funding for further courses.
Practitioners are recruited for their professionalism, their ability to create a positive therapeutic relationship and their motivation. They need to share in IDT's vision and statement of purpose; this means that IDT looks for a good match, not just good practitioners. All new practitioners undertake a two-day induction course prior to starting work at IDT. This includes specific information about the conditions treated and a whole day on refining communication skills to provide the warm yet professional approach for which practitioners are appreciated. Volunteers develop and refine their skills further in the non-judgemental, confidential supervision groups. During their involvement, they have access to advanced training of high calibre offered by doctors, researchers from the NHS and complementary health professionals. Practitioners feel nurtured, supported and valued and also feel greatly enriched by their involvement.
The excellence of its recruitment procedure, supervision and training for staff and volunteers was recently confirmed by IDT becoming one of the first non-profit service providers to achieve the prestigious UK Government award 'Investor In People'.
Many clients undertake voluntary work for IDT. This opportunity can be very beneficial, particularly to those who may have been off work for some time. It allows clients to develop confidence in a work place environment that is safe and supportive and allows them to work at their own pace. They also bring their own personal experience and understanding of illness to the organisation, ensuring that it does not lose sight of its clients' needs.
Access to information about complementary therapies, many of which might be unfamiliar to new clients, is also important, so that clients can make the right choices for themselves. All new clients have an appointment with the complementary health advisor who gives a basic introduction to the holistic ethos and helps the client to choose a therapy. The advisor is also responsible for continuity of care and client advocacy.
In addition, the IDT library holds various books, magazines and journals focusing on complementary approaches. The organisation is also currently involved in a European-funded Internet project that is developing tools to enable people with HIV and professionals to gain efficient access to high-quality information through the world-wide web. It will be developed, maintained and reviewed by patients and health professionals, both complementary and orthodox. This project is unique in that the content of the site is defined by patients as much as health professionals and allows for personal input from patients rather than a health professional deciding in isolation what is useful information. At present, this site concerns HIV, but if the project is successful, it could then become a model for other conditions, providing a valuable self-help tool within the information field. IDT's involvement is ensuring that holistic approaches to illness are well represented.
Clients' comments included "IDT offers a situation where you can be in control and do something for yourself, choose your therapy. Together with the courses this is very empowering".
Looking at the following higher levels within the context of an organisation, it becomes increasingly difficult to define what specifically contributes to healing at these levels. I think that by paying attention to what can be achieved at the level of environment, behaviour and capability, the remaining levels almost automatically form out of the levels below. However, there are some general points that can be identified.
Beliefs
Beliefs and values provide the reinforcement (motivation and permission) that supports or inhibits capabilities. In addition to developing behavioural skills and capabilities, healing must also address the beliefs and values of the people involved. This involves the why of healing and relates to the healing of the heart. IDT does not set out any dominant ideological framework. In its services guide[4] given to all clients it states:
"Holism is the balanced integrity of the whole, encompassing body, mind, spirit and social environment. The term holistic suggests whole-ness. Some people use therapies as an alternative to conventional treatments, others use them as complementary. We want to help you find the approach that is right for you."
Due to the nature of the illnesses being treated, many clients are on conventional drug treatments. It is imperative therefore that practitioners and staff support clients in this treatment choice and do not try to impose their own beliefs onto clients. This is similarly true of those clients who use the service as an alternative. This is clearly laid out in the Code of Ethics:
"Workers should refrain from commenting or making judgements upon the choices made by Clients, and the way in which Clients choose to conduct their lives…" and "No Worker should seek to exert any unreasonable influence over a Client."
IDT also strives to foster greater understanding between orthodox and complementary health professions, and so consultants and GPs are routinely sent follow-up letters detailing outcomes of treatment provided by IDT, subject of course to the client's consent.
Within IDT, no particular type of therapy is placed above another. All approaches are seen as having the potential of providing benefits to individuals in differing circumstances. The types of therapy available at any one time depend on the practitioners who have volunteered and passed the selection procedure, rather than on any guiding ideology as to what is useful or not.
IDT staff and practitioners do not ascribe meaning to illness. This again is particularly important in light of HIV and cancer where there may be many negative beliefs, for example, about not being good enough, holding on too much to emotions, etc. It is important that the client is able to come to their own conclusions about what their illness means to them.
The comments from clients at the level of beliefs, reflect this non-dogmatic approach. They included "there is a sense of there always being a possibility of moving forward", "good to be in a place where someone believes in you and doesn't think you're mad", "strengthens and supports the style in which I want to look after my own health" and "gives me a sense of being open to possibilities".
Identity
Identity involves a person's role, mission and/or sense of self. This involves the who of healing and relates to the healing of the soul.
When I started working for IDT, one of the first things that came to me was that its initials formed part of the word IDenTity. This seemed particularly appropriate as the level of identity relates in the NLP model to the immune system, the part of the body that identifies what is us and what is not us. IDT's mission, (the level of organisational identity) is "to nurture the well-being of people with immune-related illnesses". There seems to me to be an uncanny synchronicity in this, which reminds me of the saying "co-incidence is God's way of remaining anonymous". Importantly, within this mission statement, there are no claims for cures or magic bullets and it firmly puts IDT's role as supporting the client's own process, rather than directing it in any particular way. It presupposes an individual, personal approach to healing rather than dogmatic adherence to treatment protocols directed at specific symptoms.
On a practical level, there is an attempt to make everyone – clients, practitioners, staff and volunteers – feel part of a 'healing' team, with as little hierarchy and few barriers as possible. Everyone's input is valued and this is particularly important for clients who benefit greatly by being in a position of responsibility with regard to their own healthcare, when perhaps previously their illness had felt outside their control. To ensure that IDT is always listening, regular feedback sessions are held where clients can comment on existing services and suggest new ones. Practitioners, staff and volunteers also meet in the course of Networking evenings. This is another opportunity for feedback. Everyone has an important role within the organisation.
A practitioner's comment at this level was "working on a voluntary basis is part of my personal growth process. I identify with the purpose of IDT" and from a client/volunteer: "I think I've developed as a person helped by my associations with IDT" and from clients: "the only place that helps me learn how to help and develop myself" and "IDT allows me to go further". These comments, I believe, demonstrate that at the identity level, IDT works by allowing people to bring their focus back onto themselves and so develop their own sense of self, rather than focusing on their condition and other external factors.
Spiritual
Spiritual involves the who else and what else of healing and relates to the healing of the world.
I think that the most important point here is that at IDT there is no specific religious or spiritual ideology. The overriding sense is that this is left up to the individual. This allows people of all religious and spiritual practices to come together and work in mutual respect and understanding.
There is a meditation room that is open to all. This personifies the sense that at IDT, spirit is very much a personal choice, i.e. what works for the individual.
A sense of community is also fostered. Recently, IDT has established self-help groups for each condition. This is an opportunity for clients to get together, share their experiences and help and support each other. Fundraising also brings people together. Recently, IDT organised a 'Vertical Challenge', a team race up the IPC building in London. It was a great credit to IDT that people from all groups – clients, practitioners, volunteers and staff – were involved at all levels from the organisation and stewarding through to running up the building itself, all 29 floors! There is an opportunity for all to go beyond themselves if they choose.
A comment from one client was "the fact that this is not a religious establishment is important. There is no bias towards one religion and this gives me a greater respect of IDT and IDT respects me in my religious beliefs" and from a member of staff: "working here gives me a sense of something greater. Life matters, people matter, IDT says the above and is actively proving it" and from a volunteer: "there is a spiritual thread that is not immediately obvious – a perfect balance".
I hope that in this article I have gone some way to outlining the current model of healthcare that IDT uses. By relating it through the model of Neuro-Logical levels, I have aimed to give an overview that is holistic in its approach, appropriate to the work of healing.
I propose that in any complementary health organisation it is important to be aware that all the levels from the environment, through behaviours, capabilities, beliefs and identity to spiritual, need to be considered, as healing involves an interaction of some or all of these levels. 'Stepping' through the levels can be a useful way of aligning at the personal, group or organisational level and may highlight areas that require attention.
When dealing with serious illnesses, as in the case of IDT, it is vital that an organisation considers all these levels not only in relation to its clients' well-being, but also in relation to its own organisation; its 'health'.
References
1 Featherstone C and Forsyth L. Medical Marriage: The new partnership between orthodox and complementary medicine. Findhorn Press. 1997.
2 Dilts R and DeLozier J. NLPU, Advanced NLP Booklet. Dynamic Learning Center. 1997.
3 Renoux M and Pedro L. Immune Development Trust Code of Ethics and Practice. IDT. March 1997.
4 Pedro L. Immune Development Trust Services Guide. IDT. 1999.
Further Information
Practitioners interested in an IDT clinical placement or in IDT's training courses should contact Cynthia Gibson on 020-7704 3803 for an information pack. E-mail: info@idt.org.uk
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