How did you become a health consumer representative?

42 years ago I was diagnosed with Addison’s Disease and Hypothyroidism. This was after almost two years of severe illness and being told by the medical profession that there was nothing wrong with me. I almost died and this became the impetus for me to set up a support group. It all started from there.

What – for you personally – is the most important part of your health consumer representation work?

As I have been an advocate for many years, my work has evolved and I now work more with medical colleges, hospitals and university research. The most important factor for me is giving a voice to patients. Especially to the professional health institutions, where historically, the involvement of patients has not been part of their planning or organisation. It’s rewarding to be able to contribute a viewpoint that hasn’t been considered and can build good relationships. I have been working with the College for Emergency Medicine for eight years and have been involved with training and re-writing standards and quality procedures as well as other projects.

Do you find that people in health are listening to what you and your health consumer representative colleagues have to say?

Yes, certainly in the field I work in. There has been a strong movement of patient inclusion in research and training. In hospital emergency departments, the feedback I get is that physicians really want to hear patient stories and are keen to learn how to interact more effectively with patients. They particularly want to hear feedback from patients, not just the things that go wrong.

Unfortunately, there is still resistance to consumer representatives from some medical professionals. I was told once – after a talk I gave – that when the doctor saw that a patient was speaking she thought “Oh God, not another whingeing patient!”. So we still have some way to go.

How did you become involved in health research and what is your hope for that kind of research in the future?

I have been on many committees for healthcare and my involvement in research really just evolved. I have been invited into several research projects and I believe that the patient voice in research is very important.

The patient is the end-user of all healthcare services. All medical research, learning and training of medical professionals is ultimately for the purpose of treating patients. It must then make sense to include patient experience at the planning stages, where it can inform policy development. My hope is that there will be more involvement from consumer representatives as the medical profession accepts that patients are an integral part of the process.

What experiences in your personal life have made you a better health consumer representative or taught you skills that you use in your advocacy work now?

I started life as an opera singer and the training in confidence and performance has assisted me in public speaking. As a professional Counsellor, I have learned skills that assist in relationships and, particularly important, effective listening. Effective listening skills have taught me so much about the experience of others.

I guess my 42 years of experience in running support groups, my involvement in many different healthcare projects and the one hundred or so admissions to Emergency have all helped to improve my skills.

What advice would you give to others thinking about becoming a health consumer representative?

Good communication skills are essential, as is the ability to speak well in public as well as effective listening. It’s important to have health literacy beyond one’s own condition and not to use opportunities to focus on personal issues. Your personal story is important, however, as a consumer representative, you represent all patients, even if the platform is for a particular condition or disease.

Having confidence in your abilities and being well prepared are essential skills as there is still opposition in the medical world to the involvement of consumer representatives. Becoming a consumer representative is really rewarding work where you can make a significant difference. By working together in mutual respect, changes are made that improve healthcare and reduce harm to patients.

 

Maureen has published research work as a health consumer co-author: Interaction and innovation: practical strategies for inclusive consumer-driven research in health services in the British Medical Journal (BMJ).