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Uncharted Territory

A hunch that she was on to a fresh approach to tackling phantom limb pain led Tina Brown into an unexpected research project. Catherine Blackledge traces her path

At age 57 most people are planning their   retirement, but not physiotherapist Tina Brown. Instead, in 2004, she was devising her first research project: an investigation into reflexology as a treatment for phantom limb pain.

A clinical lead specialist for amputee rehabilitation at Maltings mobility centre, Wolverhampton, Tina was acutely aware of the effects of phantom limb pain. Often severe and unremitting as well as unresponsive to medication, it can destroy a person's quality of life, with some patients feeling suicidal because of it.

The idea of using reflexology to treat such patients came to her two years earlier as a result of a personal experience. A keen sportswoman, participating in cross-country runs, marathons and karate, she had developed shoulder pain when she pulled muscle fibres by lifting too much weight in the gym. A session with a reflexologist helped.

'I thought, “I know she hasn't healed the tissue, but she has stopped my awareness of the pain”, and it made me think about its application to phantom limb pain,' says Tina.

At that point, she did not consider doing research. Instead, she asked her manager whether a reflexologist could be brought in to treat patients at the Maltings. Finding that this was not possible, she decided to undertake training in reflexology herself. One year and a reflexology qualification later, she went back to her manager. The response this time was more positive, but there were still obstacles before treatment could begin, not least ethical approval to use the technique as part of her NHS practice.

A literature search had revealed a lack of an evidence base for the efficacy of reflexology in treating phantom limb pain. There was anecdotal evidence and a couple of single case studies, but no published research. Without such evidence, permission to use the treatment was needed from her local regional ethics committee.


Tina started looking at the procedure for completing an ethics protocol. 'This essentially meant running and devising a research project. I hadn't got a clue,' she says. She enlisted the support of the research and development department within her trust - Wolverhampton City primary care trust - which gave her an outline of what to do so that by November 2004 she was ready to submit her ethics protocol, outlining her intended treatment plan.

She recalls the regional ethics committee meeting, which included doctors from the PCT and from the Royal Wolverhampton hospitals trust, as a daunting affair. 'You are at the front on your own in front of eight doctors. Your knees are knocking,' she says. The committee was positive but pinpointed questions that needed to be addressed, and did not give immediate approval.

The study design was one difficulty, and again support from the trust was essential in solving the problems, she says. Tina got help from PCT consultant clinical psychologist Catherine Frankenburg to devise ways of overcoming the lack of a control group in her original proposal, which had arisen because of difficulties over whether it was possible to give 'sham reflexology'.

The solution was to set up the project as a timeline where clients kept pain diaries for six weeks before treatment, during the six weeks of treatment and during a six-week resting phase. Comparisons could be made with a 'no treatment' baseline, and assessments could also be carried out as to whether there was any residual effect from therapy or whether pain quickly returned to pre-treatment levels. In addition, the ethics committee asked for another two six-week phases, where clients were taught how to treat themselves with reflexology and then monitored the self-treatment. She incorporated this, choosing to teach clients hand reflexology: 'Most people can't get down to their feet, so it was an easier option,' she says.


By February 2005, her second protocol was submitted and she got the all clear to begin treating phantom limb pain with reflexology. The pilot stage ran throughout the rest of the year, with Tina due to begin data analysis in 2006.

Here she hit a further hurdle as she was not clear exactly how to proceed, and staffing problems at the trust R&D department meant she could no longer rely on support from that quarter.

She knew she needed to validate her data via a computerised statistical package but the problem was accessing one. 'I didn't know where to turn. I had graphs that looked good but I didn't know how to put them through any tests,' she says.

The break came via her son Mark Waldron, a software developer. He put her in touch with one of his contacts - a statistician - who was able to run the data through parametric and non-parametric tests. However, she found the resulting new figures equally confusing, so she enrolled on a research methods in health module at the University of Wolverhampton. At last her data began to make sense.


The results, as yet unpublished, look promising. Over the 30-week period of the trial, there was an improvement in the perception and the intensity of the phantom limb pain in eight of the 10 patients involved, with a corresponding improvement in the duration of the pain and effect on lifestyle. In addition, the improvement was maintained when the clients self-treated.

Tina is now hoping to have her study published in a complementary therapies journal, and is preparing a paper for submission. She is lecturing on her work, speaking at the British Association of Chartered Physiotherapists in Amputee Rehabilitation annual general meeting and study day, and has been asked by other interested physios to talk to them. She is also travelling to Canada next month to present a poster at the World Confederation for Physical Therapy congress.


Notwithstanding this enthusiasm, Tina is pragmatic about reflexology's therapeutic potential. 'I don't see it as being able to treat everyone... I don't see it as a cure all, a magic wand, but it is a help. It is another modality physiotherapists can have in their toolbox. It's cost-effective and non-invasive and you can teach patients how to do it.'

She points to how views of acupuncture have changed in the past couple of decades. 'I think reflexology is taking the same journey. This is what I'm trying to do, get the first foot on the ladder.'

She hopes her research will spark interest in others and that they will continue what she has started, for example with a larger follow-up trial. She knows there are other physiotherapists qualified as reflexologists who are also currently unable to use the therapy to treat phantom limb pain because of lack of an evidence base. She hopes her study, and any that follow, will change this.

Indeed, her story could be an inspiration in a wider sense - to any therapists harbouring a research question or idea. She does not have a typical research background but she has never let this hold her back. She left school at 15 without qualifications and was 42 when she graduated as a physiotherapist. She says: 'I always thought there was more to me than cleaning toilets.'

She wants to continue research after she retires, if possible. 'I would love to go to university full-time even at this age. The children are trying to get me into slippers but I'm kicking. I would say, just grab any opportunity you can, while you can, because life's for living. Just live it to the full.'Looking back on her journey over the past five years, she says. 'It didn't start as further education. It started out as a means for me to treat people and it has sort of grown. I think if I had stopped and thought about it I would have had cold feet, but I've just gone with the flow. Although it's been a long trek, it has been worth it.' FL

Research questions? Use the networkDuring her research journey, Tina Brown says she had heard of the National Physiotherapy Research Network but did not think it could offer her the advice she needed. 'I felt it was more for people that were actually doing research through proper pathways, like university, whereas I sort of fell into this.'

This is a common misconception, as the NPRN is for all physiotherapists interested in research, regardless of background or level of experience. If you are thinking of becoming involved in research, approaching an NPRN regional hub could be a useful starting point.

Members may be able to help you talk through your ideas, start to take these ideas into fuller research questions and consider the best approaches to take. You may find you are put in touch with others working in the same area, or pointed towards suitable workshops and more specialist advice as you progress.  Full details of the NPRN and its hubs, including contact details for the facilitators, can be found at:

Pain like a red hot skewerRobert Westwood was 17 when cancer meant having his right leg amputated (a hemipelvectomy). He is 50 now.

Since day one, he has had daily phantom limb sensations. These shift from moderate to severe pain lasting for a few days. Mr Westwood says he has never been able to pinpoint the reason for these changes.

'Sometimes the severity of the pain keeps me awake for three or four days. It's like a red hot skewer being pushed down in your toes or leg.'

Years ago he sought help and advice from the medical profession. However, he says he was told either that it was all in his head or that he had to live with it as there was nothing that could be done.

When Tina Brown approached him to take part in her study, he says he was glad 'if somewhat sceptical'. He adds: 'I was really surprised when it helped.'

Towards the end of the first phase of reflexology (about four weeks into treatment), Mr Westwood noticed a change. 'I still got mild sensations but where I would get moderate to severe pains once a week, that eased. One day you wake up and think, “I haven't had a severe day in ages”.'

He was disappointed when the sessions ended. However, he is continuing to use the self-administered hand reflexology he was taught by Tina, and finds this helps.He would recommend reflexology for phantom limb pain to others, 'without a doubt'.


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4 May 2007

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