Writing Group for Women with Chronic Pelvic Pain - Final Report

Introduction

This was a joint project in which we each had distinct roles, Lesley's role was to be responsible for the over-all management of the project and KateÕs role was to facilitate the workshops. Having said that, this was a highly collaborative project in which we discussed decisions and issues and took an equal share in all the decision making.

Our original intention was to run writing workshops for women with chronic pelvic pain. Our aim was to provide this group of women with the opportunity to explore how writing creatively could help them to manage some of the issues they were struggling with and to find new perspectives on their lives. After several hiccups and a somewhat false start we came some way towards achieving this aim. Along the way, we encountered a number of hurdles and have ourselves struggled with issues relating to recruitment, enjoyed developing a collaboration and finally provided three writing workshops for women with chronic pelvic pain. This report sets out to provide some thoughts about the recruitment issues, comments on the collaboration and information on the workshops and their outcomes.



Recruitment

Our initial recruitment strategy was to contact everyone who had attended a psychologically based group for women with chronic pelvic pain in our partner NHS Trust and to provide them with information about the writing workshops. Colleagues working locally who might have seen women with chronic pelvic pain were also informed about the workshops. From this initial recruitment initiative four women expressed an interest in the workshops, three of whom said they wanted to attend. In order to recruit more women further efforts were made through wider publicity. Information about the group was circulated across the Humber NHS Hospital Trust and to all Hull General Practitioners. A press release was sent to local newspapers. By the time the workshops were due to start, no further participants had been recruited. Of the original three, one then said she could not attend because of other commitments and a second failed to turn up for both of the first two writing workshops. In the end only one woman attended and we ran three two hour workshops rather than our originally intended five two and a half hour workshops. This was not the end of the story, however, as following the start of the workshops we were contacted by four other women who had either seen the information in the press or heard about the group through word of mouth. It was too late to include these women in the initial workshop sessions and so in consultation with Victoria and Lapidus, we agree to use our six remaining session hours, to run three further two hour sessions in September, with our original participant and the four new participants.

We have considered at some length what the difficulties with recruitment could have been but are able only to speculate on this as we have no direct information from those who did not contact us. We divided our ideas under two loose headings and have summarised them below.

"What's creative writing got to do with me?"

Many of these women have struggled to get their pain recognised as a real physical problem, and not a problem "in their heads". They have to continually prove that it is a physical problem. Did offering creative writing sessions have the underlying message that actually we saw chronic pelvic pain as having a psychological or emotional root? We considered the published narratives that there are out there about illness and thought that the majority were about cancer. Who had ever written about chronic pelvic pain?

The cancer narratives are often built around the sense of a lack of control and the reality that to a certain extent control is not possible. Women who suffer from chronic pelvic pain share the sense of powerlessness, but are often plagued by the idea that control must be possible.

Unlike with cancer sufferers, women with chronic pelvic pain are up against people's lack of acceptance that what they suffer is a disease at all. So we can say in general, women with pelvic pain will not find themselves in the majority of written narratives that are out there, and so may not consider that writing their narrative is acceptable or useful. Embarrassment plays a large part in these women's lives. Whether the chronic pain is connected to gynaecological problems or not, it is lodged in that part of the body which is seen as private, often not quite nice, and certainly not to be talked, let alone written, about. The vast majority of people who have chronic pelvic pain are women and there is a gender issue here. The idea of hysteria being connected to a woman's reproductive organs, specifically her womb, has not gone away either within the medical profession, or within the general population. And what is more likely to get a woman the accusation of being hysterical, than sitting down and writing madly, madly writing, for hours on end?

These women want to be heard, but not by a piece of paper.



Groundwork

Kate has run successful writing projects in health settings and in each case what's been crucial has been the opportunity to go (at least initially) to where the participants would normally be (for instance user run groups) and to get health professionals on side. This takes time and a lot of reinforcement. In publicity terms, it's said that people need to hear something three times before they will act on it. Generally, word of mouth recommendations and a personal reputation, which Kate has built up in Scarborough through about three years of work, are crucial.

We believe that this pilot project, has in fact been a project about doing some of the groundwork in order to create the impetus for a pilot project. These days, however, it can be very difficult to obtain money for groundwork, since the focus is always on outcomes.



Collaboration

There were two key collaborations in this project. Firstly there was the collaboration between the two of us. For both of us, this was personally very satisfying, we enjoyed the sharing of knowledge, the learning from each other and our different ways of working, the sharing of our passions. There were problems in that this project hit us at a time when we were both exceptionally busy and so occasionally the communication wasn't as good as it might have been and there were frustrations. But over-all we feel we have been enriched by the experience.

Secondly there was the collaboration, or perhaps it should be termed, interface between Lapidus and the University of Hull. The funding for the project was given to the university where Lesley works and administered from there. The institutional process for even the simplest administrative task can be slow and requires a lot of signatures. When an institution such as the university is dealing with a small pot of funding (which in their terms was what Lapidus was offering), the machinery makes it like going through a UN summit meeting to buy a local cinema ticket. This needs to be taken into account when planning projects such as these. We were, perhaps, not quite prepared for this and could have managed it better with hindsight. There were, of course, positives to having the university and the NHS trust involved. We had access to a publicity office and a relatively simple way of contacting all GPs. A suitable venue was available free which was accessible by public transport, clean, comfortable, had all the required facilities, and there were other staff around if, for instance, someone had been taken ill. This is a step up from working in community settings which can be cold, out of the way and isolated.



Workshops and outcomes

In September 2009, we ran a further three workshops each lasting two hours. Five women attended the first workshop, four the second and two the last. Reasons for not continuing were finding out Òit wasnÕt for meÓ and competing appointments. A summary of the workshops and womenÕs verbal feedback is given below.



Workshop summary and feedback

What was covered:
Freeing up the writing hand - free writing. Journal keeping.
>Metaphor.
Keeping going.

Expectations of workshops voiced (on flip chart paper) in first session:
Open mind
Hearing from others
Produce some work
Express my pain
Fun - social
Ideas - impulse to write more
Me time
Self-expression
Something worthwhile for each person

Feedback after first session (phrases left by participants on yellow stickies):
Good, interesting
Interesting
Happy
Relaxed
Pleasant, wanted more writing but hope can do it at home.

Between first and second session participants who returned (one did not) had written in their journal regularly. Comments: "I have found the unexpected." "Takes me to the emotion."

Last session, only two participants. On looking at expectations from first session what was appreciated was: the writing time, the opportunity to meet and talk to others, finding "me" time. However, it was felt that over-all the writing time and the time to share was too short.
The postcard exercise (writing a postcard back from a pain-free place to our pain) brought out some very raw emotion, sadness and anger.
Final comments: will continue to write my journal focusing on the emotion, "I will find the time to do it because it does help."

Evaluation
All women attending the workshops were asked to complete Likert rating scales for pain (Please rate how your pain is now, 1=no pain, 10=worst pain imaginable) and emotion (Please rate how you feel emotionally right now, 1=worst you can imagine, 10=best you can imagine) before and after each workshop. Clearly as the numbers were small, it is difficult to draw any firm conclusions from these but it is worth noting that in the first session the pain rating decreased for three of the participants and remained the same for the other two, while the emotion rating improved for three women and reduced for two. Results in week two and three were less clear with some indication that pain and emotion were changing independently and with a mixed picture of increases and decreases in both pain and emotion. The fact that pain reduced at all, is very encouraging and may be an indication that the process of writing, distraction and an enjoyable social experience can reduce the experience of pain. The fact that emotions became more negative on occasion, may simply reflect the difficult nature of the material being discussed and written about in sessions and from the data available it is not possible to comment on whether this was ultimately positive or negative.

As well as ratings, we received feedback from three participants. Some of the comments are given below:
The sessions provided Òstructured time in which to write which set me offÓ and an opportunity to learn that Òthere isnÕt a right and wrong way of beginning to set about writing.Ó They enjoyed Ògetting together with a group and teacher to writeÓ and Òlistening to the tutor and every member of the group.ÓThe three women who fed back all wanted to continue writing after the sessions.
A couple of weeks on from the end of the group, one woman e-mailed that ÒI did enjoy the creative writing workshop very much and haven't stopped writing sinceÓ and another commented ÒI really enjoyed the writing classes, it was really good to learn different types of writing and tips on how to get writing, it has helped with the pain, as I can write and try to forget and that relaxes me which helps.Ó
We had discussed the inclusion in this final report of writing from the participants. In the end we left it up to any participant to submit something if they felt so moved. This did not happen and we believe this to be a function of the shortness of time and the stop-start nature of the final project

Final comment
Despite the ups and downs of the project, ultimately we feel it has been useful both in helping a small number of women and in gaining some useful experience in undertaking such projects. The women who took part undoubtedly enjoyed it and benefitted. Time was a key issue for us, trying to recruit from ÒcoldÓ was difficult in a health related group such as this. Introducing writing into an existing group seems likely to be a more effective way of generating a core group more quickly. Even having generated a group, it seems it would take time for that group to gel and take off and develop so short term projects need to be carefully thought through so as to be achievable.
We both remain convinced that creative writing has a place in health settings and can be a route towards a greater sense of well-being both mental and physical. This pilot project has raised a number of issues around recruitment, time and how the creative arts fit within the medical field. We hope that it will be useful to anyone interested in developing a more creative and whole person approach to health and well-being services.
30.11.09

Lesley Glover and Kate Evans

Two Lapidus colleagues, Lesley Glover, a clinical psychologist who writes, Kate Evans, a writer who is a counsellor in training, come together. Lesley co-runs a therapeutic group for women managing chronic pelvic pain. She knows these women are often unheard, their complaints are not taken seriously enough, they become silenced. Kate has experience of running creative writing groups in health settings. They plan to offer a series of creative writing sessions as a means for these women to find their voice. Simple? So why did so few women come forward? How does such a collaboration work? Kate’s presentation at the Training Day explored what went wrong and what went right, and compares this project to experiences in other health settings.

Lesley Glover is a senior lecturer in clinical psychology at the University of Hull and an honorary consultant clinical psychologist in the Humber Mental Health Teaching NHS Trust. She has worked in clinical health psychology both as a clinical psychologist and a researcher since 1992. Her work has centred on understanding the ways in which people make sense of their health problems and the psychological interventions which can help people to manage their experiences. She currently co-runs a group for women with chronic pelvic pain. Lesley has a particular interest in reflective practice and in helping trainee clinical psychologists to develop reflective skills. She is involved in running reflective writing workshops for trainees on the clinical psychology course at Hull. Lesley is a part-time creative writing student at the University of Hull.

Kate Evans used to write mainly for publication, then she began to write madly, personally and eventually therapeutically. Currently working on poetry and a non-fiction book, she teaches creative writing at the University of Hull in Scarborough and facilitates therapeutic groups in the community and mental health settings, while training to be a counsellor. She was Poet in Resident in 2008 for Hospital Arts in North East Yorkshire. She is a Professional Member of Lapidus and attempts to co-ordinate Lapidus events locally. www.writingourselveswell.co.uk