Face to Face
Photographic arts project
Funded by the Wellcome Trust People Awards
Paul Taylor: Medical Physics and Biomedical Engineering, SDH
Peter Ursem: ArtCare, SDH
Karen Hitchlock: Photographer.
The Department of Medical Physics and Biomedical Engineering, funded by the Multiple Sclerosis Trust charity, is conducting a randomised controlled trial, on the use of the Odstock Dropped Foot Stimulator (ODFS), to correct dropped foot, in people with Multiple Sclerosis (MS).
In addition to the trial, we would like to present our research volunteers and their own unique experience of living with MS and to investigate their relationship between us the scientists and the technology we have developed. We would like to empower our volunteers, by giving them an opportunity to criticise and raise issues that are important to them. To find common ground and a mutual understanding of the impact of MS on peoples lives, the limitations, disabilities and effect on relationships, work, hopes and aspirations. By investigating and probing the complexity of our volunteer/professional relationship, we hope to recognise and encourage a reappraisal of our values, encouraging new standards of behaviour, treatment and monitoring. By presenting our research volunteers in this arts project, in conjunction with the science, we hope to present a balanced view and to raise a dialogue, educate, stimulate debate and influence attitudes and beliefs of other health care professionals, scientists and people with MS.
To achieve this we are collaborating with photographer/artist Karen Hitchlock, commissioning her to explore these objectives through photography and narrative. The commission will result in a series of photographs visualising the story of the emotional and physical experiences of the people involved in the trial, within the context of our research.
The project will produce a touring exhibition and an accompanying catalogue. The exhibition will open at the International Functional Electrical Stimulation Society annual scientific conference at the Bournmouth International Centre in September 2004 and will then be exhibited at the annual MS Trust Conference in Harrogate in November 2004. The MS, clinical and scientific communities will attend the conferences and it is at these conferences that it is hoped that the ODFS trial results will be presented.
The Department of Medical Physics and Biomedical Engineering, funded by the Multiple Sclerosis Trust charity, is conducting a randomised controlled trial, on the use of the Odstock Dropped Foot Stimulator (ODFS), to correct dropped foot in people with Multiple Sclerosis (MS).
In MS, many people are left with some degree of movement disability, due to disordered motor control as a result of spasticity, weakness and poor co-ordination. This loss of selective movement is often characterised by a dropped foot; the inability to lift the foot forward during walking, causing it to drag along the ground, as well as instability and weakness at the hip and knee. These factors contribute to reduced mobility and increased fatigue with consequent restriction in activities of daily living and quality of life.
Functional Electrical Stimulation (FES) is neuromuscular stimulation to activate paralysed or weak muscles to produce movement. While there is evidence for the effectiveness of FES for correction of dropped foot for people with MS; there have been no well-designed or definitive trials of the technique. We are therefore conducting the trial to specifically determine the orthotic effect from using the ODFS and comparing the progression of its users with a control group.
FES has been developed at the Department of Medical Physics and Biomedical Engineering at Salisbury District Hospital to aid walking in neurologically impaired individuals, many of whom have a dropped foot. The Odstock Dropped Foot Stimulator (ODFS) is a single channel foot switch controlled neuro-stimulator. Stimulation is applied to the common peroneal nerve using surface electrodes to elicit dorsiflexion and eversion of the ankle to aid foot clearance during the swing phase of walking. Stimulation is timed using a pressure sensitive foot switch placed in the users shoe under the heel. When weight is taken off the switch, the stimulation begins and continues until the heel is returned to the ground, thus correcting a dropped foot.
The hypothesis that the ODFS is an effective orthosis is indicated by an increase in walking speed and a reduction in the effort of walking. It will reduce the incidence of falls and will improve the quality of life of those who use it.
In addition to the trial, we would also like to present our research volunteers and their own unique experience of living with MS and to investigate their relationship between us the scientists and the technology we have developed. We would like to empower our patients, by giving them an opportunity to criticise and raise issues that are important to them. In this way we hope to find common ground and a mutual understanding of the impact of MS on peoples lives, the limitations, disabilities, effect on relationships, work, interests, hopes and aspirations.
There is a well known expression that 'science knows no boundaries, but in fact as scientists we are very good at setting boundaries, obeying protocols and focusing on results. As it is this type of knowledge that is seen to matter in the scientific community, it is impersonal, public, productive and verifiable. But we do feel there is a weakness in our scientific approach as it has allowed us to become more and more abstracted from our clients and their reality. It also encourages us to be dispassionate and detached, an approach, which continuously brings in conflict with our roles as the objective researcher and the caring clinician.
We feel that there is a moral justification in widening the approach, to produce a shift of values which empowers our research volunteers, drawing away from the analytical and impersonal method and further towards the experience of our volunteers. We would like to use art to address these issues and to break down the traditional boundaries we have set ourselves. By investigating and probing the complexity of our client/professional relationship, we hope to recognise and encourage a reappraisal of our values and recalibrate our relationship with our research volunteers, encouraging new standards of behaviour in research, treatment and monitoring. By presenting the person with MS, we hope to present a more balanced view and to raise a dialogue, educate, stimulate debate and influence attitudes and beliefs of other health care professionals, scientists and people with MS.
We are collaborating with photographer/artist Karen Hitchlock and Artcare (Salisbury District Hospital Arts Service), to explore through photography and narrative these issues and objectives. This will lead to a new body of work that is personal, experimental and intuitive, which will visually narrate and tell a story of the emotional and physical experiences of those involved in the trial.
The trial volunteers who would like to be involved in the project will be identified by sending a written invitation to participate in the project. Their inclusion will of course be completely voluntary. Approximately fifteen trial volunteers will be selected to take part in the project and the clinical/scientific staff involved in the trial will also be invited to take part.
A series of interviews will be conducted with the clinicians and our trial volunteers (they will include those using the ODFS and the control group). All the interviews will take place in the persons own home, as it is thought that this setting will be less threatening and that it would also put everyone on an equal footing.
Each volunteer will be asked a series of open questions such as:
- What does having MS mean to you?
- What is your personal view of MS?
- What is your view of the future?
- How do you feel about being on the ODFS trial?
- How do you feel about being a research volunteer?
- How do the feel about being in the control group? (If applicable)
- What is your view of the science involved in the MS Trial?
- How do you feel about using the ODFS to walk?
- What would you like to say to the health care professionals and the scientists involved in the ODFS Trial?
Each clinician/scientist will be asked a series of open questions such as:
- What does MS mean to you?
- What is your personal view of MS?
- What would like to say to other health care professionals and people with MS?
- What is your view of the science?
- What are your main worries and concerns?
- What do they feel about the technology?
- How do they feel about being a clinician on the ODFS trial?
- What is your view of the future?
The general discussion and answers to the questions will identify the themes and concerns of the research volunteers and the clinicians. The issues raised will guide the subsequent photographic sessions and how they wished to be portrayed. It is envisaged that each portrait will give no clue to the subjects health, but will be representative of them as people who have some important subjective and personal issues to raise.
It is envisaged that the portraits and extracts from the interviews will form the main structure of the exhibitions and accompanying catalogue.
The interview will be recorded, so Karen can accurately transcribe the parts of the interview that the participants have highlighted as being important to them. The photographs will also be processed and printed by Karen.
Karen will send each participant a print of their portrait and the transcribed extracts from their interview that they highlighted as being important. If they are suitable and the participant would like them to be used in the exhibition and book, they will be asked to sign and return the accompanying consent form. If they are unhappy about either the portrait or text, then Karen can meet them to discuss their concerns and how they can be addressed.
If they wish to withdraw from the project as they are unhappy with the results, then they are free to do so and the negatives, prints, extracts and taped interviews will be destroyed.
The outcome will be a touring exhibition and an accompanying catalogue, which will present the people involved in the trial, in the context of our research. The first exhibition will open at the International Functional Electrical Stimulation Society annual scientific conference, which is taking place in the UK for the first time, at the Bournemouth International Centre in September 2004 and is hosted by Medical Physics. In November 2004 it will be exhibited at the annual MS Trust Conference in Harrogate. It is at these conferences that the trial results will be presented. The conferences will be attended by at least 800 delegates from the UK and overseas and will include clinicians and practitioners specialising in MS, as well as people with MS.
The exhibition will then be displayed at Salisbury District Hospital and also form a permanent exhibition on the Salisbury FES web page (www.salisburyfes.com).
The exhibitions and catalogue will be promoted through IFESS, MS Trust, NHS, Visual Art media and the general press.
Plans for 2005/2006
We would like Face to Face to have a life beyond this proposal. To extend this proposals target audience and reach into the community, as MS can effect anyone. At the end of the project we intend to apply for further funding to tour the exhibition during 2005/2006.
For more information about the trial click MS ODFS RCT.