Nine weeks with the Health Experiences Research Group

Busford would be a more appropriate name for this town, I thought as I walked through the city center in streets cramped with buses colored red, green, or blue as the one I arrived on yesterday evening from the airport. It was Sunday September 4th, columns of tourists still massed in this renowned place of academia. Tomorrow I would meet the people of the Health Experiences Research Group. What would it be like? I continued my exploration, strolling southwards, and there grazing on a wide meadow I found four specimens to justify the ox before ford. Growing up on a farm I felt a little less far from home observing the cattle munching in their slow manner of motion.

First week – I sit in on a meeting of the Advisory Board for the upcoming Healthtalkonline module about multiple sclerosis. Though I am already somewhat familiar with HTO and its research methods, it is very informative to hear the HERG-experts explain the rationale of the website to an audience that is neither lay nor professional nor scientific but indeed knowledgeable about living with MS. The way they have to make their case provides an excellent opportunity for a visiting student to get an alternative introduction to the research group and its core activity.

Second week – I spend a day at the Motor Neurone Disease outpatient clinic at the John Radcliffe Hospital listening to seven conversations between the patient, his or her spouse and the specialist nurse. Besides getting a cross-sectional glimpse of the English population between 35 and 75 years I once again realize what a demanding task it is to tell your professional opinion in a non-judgemental way.

Third week – I have a second meeting with my mentor at HERG to discuss what my study visit should produce. I have put down on paper a long sequence of words, which I claim to be an outline of a framework of an article. In other words: An opaque working paper.

At the end of the week I try to figure out another enigmatic working, but Stonehenge keeps his secrets even better concealed. All I learn is that ‘henge’ is ancient English for something hanging, very similar to the modern Danish verb ‘h‚àö¬∂nge’ (to hang).

Fourth week – For the journal of the Danish neuromuscular disease association I interview the specialist nurse at the MND clinic about her and collaborators developmental work with how to talk about sexuality with ALS patients and partners. They have reported their experiences in Nursing Standard, and recently transformed that knowledge to booklets targeted at patients and partners respectively. It’s not rocket science, she says. I find the information, which is very explicit yet highly tactful, some of the best material of this type I have seen so far.

Science Oxford Live stages a lecturing event about ‘arts-based’ medicine. ‘Beyond the Evidence Base’, it is announced. A psychiatrist shows a sequence of photos beginning with hospital stairways, corridors and other deserted interiors and ending in close-ups of comforting white duvet covers over bodies, which you never actually see; but you feel as if you were lying in that bed yourself. Then a medical student shows slow motion footage of a number of people buttoning or unbuttoning the second to top button of their shirt or blouse. Some struggle, others manage easily, it is very human and so moving.

Fifth week – I am buried in a struggle with how to analytically compare HTO and journalistic narrative representations of MND patient experiences.

Sixth week – Still buried. This is a very unpleasant stage in a research process, no shortcuts. But step by step three analytical ideas emerge from the dark: Normality, Becoming a Story, Unfinalizabilities.

Seventh week – At a seminar with the HERG group I present some of my ideas about representation of subjectivity of health experiences. We have a fruitful discussion about relations between journalistic storytelling/writing and qualitative research interview/analysis.

I attend the launch for the Breast Cancer in Men section on, taking place at the Royal Society in London. One of the speakers, a cured patient and participant in the project, tells us that reading the stories of other men with the condition actually supports him today. He says it with a genuine surprise in his voice. I would like to know more about that surprise.

Eighth week – I have a long conversation about becoming seriously ill, charity, health care politics, the medical profession, one’s own story, and related issues, with a woman who has first hand personal knowledge and experience with all those subjects. Actually it is more like a discursive interview, which I record for writing an article in case we happen to discuss something new or something old in a new way. What I am searching for, I suspect, is to learn more about the English society in order to understand my own. The Danes, as any other people, like to think of themselves as having created possibly the best society in the world. That might be true, but only for the Danes.

I visit Wales and go for a long walk in the hills south of Brecon. It is like moving around inside a three dimensional model of natural history, made up of real green and grey, wet and windy. The ancient path grows younger, closer, and there comes the rainbow.

Ninth week – I attend a course on analysing qualitative interview, run by the HERG, to get a closer view ‘in practice’ of how the group processes 40-50 individual interviews to build a comprehensive catalogue of a condition’s experiences. ‘My versions of a story are phases of coding’, I note down; I keep comparing (story) writing as analysis with ‘their’ methods of analysis, and realize we may have more in common than one would guess?

The HERG is embedded in a primary health care department, and I like to view that as a potential strength, because it constantly forces you to measure your efforts against ‘practice’ or ‘reality’. I am sure it can also be frustrating, because ‘traditional’ medical science will always be blind to what it cannot see and deaf to what it cannot hear. Maybe the same goes for ‘us’, and that is why we need one another?

A few days earlier I listened to an official guide in the National Assembly for Wales talking to a group of students from Bristol. He argued how the European Union’s policy of ‘regionality’ made it possible for Wales finally to put on the UK-agenda the mere facts – no more, no less, just the facts – about the state of affairs in this southwest part of the kingdom. Was he political? I haven’t yet decided on an answer to that question, but certainly his perspective on the EU is quite different from the opinions you are told by most people in England.

The people of HERG it sounds like the beginning of a Tolkienian paragraph … how were they to visit and work with?
I hope I get a chance to come back.