If you rely on a prosthetic limb for your everyday mobility then you will need to visit a limb fitting centre throughout your whole life. In 1968, I lost my lower left leg when I was run over by a number 11 bus in Trafalgar Square, and I can remember every detail, every prosthetist, and every doctor from my 20 years at Queen Mary’s Hospital, Roehampton, and my 26 years at Stanmore’s Royal National Orthopaedic Hospital (RNOH).

The centre is as important to you as your work, family, and friends. Throughout your life you will experience the challenges of the fitting room, where you work with your prosthetist to try to achieve a successful prosthesis. But the creativity and problem solving involved in this collaboration are rarely communicated, and most people— including GPs—are unaware of either the fitting process or the fact that it is a lifelong endeavour.

Patients are now called “service users,” limb fitting centres are called prosthetic rehabilitation units (PRUs), components are called products, but what really matters is whether my socket fits or doesn’t fit. That never changes. As a prosthetist once said to me, socket fit is a ‘”dark art,” and I also remember when prosthetists were called “fitters.”

Recently, someone responded with some impatience to my representation of the complexities of fitting sockets. This is not an unusual response: surely modern technology has “solved” prosthetics? The fact that modern technology has not “solved” it is very interesting to me, and one day I hope to explore this further—funding permitting.

In 2009, at the PRU in the RNOH, discussions in the women’s fitting room revealed that many of us wanted to meet up more often because we gained so much from talking to each other, and outside the fitting room there are so few opportunities to share our lives. Two women, Jane MacLaren and I, decided to set up regular meetings. But the PRU could not provide anywhere to meet up, and some clinicians responded to the idea with real anxiety. “Meet without a prosthetist present?” said one with horror. “You want to get together and complain, don’t you?” said another.

Jane put up posters in the fitting room and collected some contact details. We managed to get a meeting room at the nearby Aspire Centre, and put up big arrows showing the way. Nobody came. We sat there drinking coffee and waiting. This went on for a few years, and Jane became briefly involved with the hospital’s user’s group. But a user’s group was not what we wanted. We wanted to get together with other women we had met in the RNOH’s fitting room and chat about our lives—that’s all.

Jane decided to start a Facebook group, a closed one that was just for the women we met in the fitting room. Why? Because we feel vulnerable sometimes. The things we talk about and share have to happen in a safe place, where we are neither isolated nor ashamed, and where we do not need to pretend. We called this group the Fitting Room Friends (FRF).

Do we complain as the clinician had feared? No, we share the realities of being an amputee woman. We know we are all different; we know some of us will never achieve full mobility. If something works for us then we share it; we post pictures and jokes, we share news about prosthetics, and we support each other during hard times. We share issues with socket fit—what a relief that can be.

I have been a practicing artist since 1972, with my work evolving over the years into film. After Dr Andrew Murrison published his 2011 prosthetics report, the FRFs decided that making a film about our experience of prosthetics might encourage amputees to gain inspiration and support from each other, as well as bringing the reality of prosthetics to a wider audience. So I applied to the Big Lottery Fund’s Awards for All, and in April 2012 we heard our bid had been successful.

Making the film within the award’s £10k ($17k; €12.5k) budget was challenging. The PRU’s manager and staff expressed worries about the filming, and I tried to reassure them and communicate the film’s intention. It was not a journalistic hatchet job on NHS prosthetics, but a representation of the fitting room from the users’ point of view. Fear not the point of view.

Five members of the FRFs agreed to be filmed and interviewed. The PRU team generously gave us their support, and I was able to schedule afternoon shoots and interviews in the fitting room. Our prosthetists also agreed to be filmed— what a great example that was of collaboration in a busy and challenging hospital setting. Eventually, anxieties about our dissatisfactions and complaints were overcome. Perhaps because we demonstrated that being better informed about prosthetics through peer support helps us to weather the difficulties and “failures” of our prostheses, as well as helping us to engage in productive dialogue with clinicians.

Since a public screening at the Wellcome Collection and a subsequent BBC Ouch interview, the trailer for our film The Fitting Room has been watched in every part of the world, from Norway to Laos. What next? Many people have expressed interest. Now we need to work out how best to disseminate the film and which audience will benefit from The Fitting Room. I am honoured that The BMJ have given me this opportunity to share the Fitting Room Friends’ journey. Perhaps, this will also extend and continue the interesting and valuable dialogues between “service users” and clinicians, which began five years ago in the fitting rooms.

To learn more about The Fitting Room film project see:
http://pegleg-productions.co.uk/blog/
http://www.bbc.co.uk/news/blogs-ouch-27794128

Nicola Lane graduated from art school in 1972. Since then, she has worked continuously as a contemporary fine artist, evolving from painting into filmmaking. She lives and works in North West London.

Competing interests: I declare that I have read and understood the BMJ policy on declaration of interests and I hereby declare the following interest: I am a director for Pegleg Productions, a not for profit company, which produced The Fitting Room film mentioned in this blog.