Hope Alexander MPH

Archive for the ‘Papers’ Category

I am continually attending “Patient Safety and Quality” meetings yet the matter of hand hygiene is not raised, or even on the agenda till I bring it up.

1. “Can we wipe out … “  is about research in the UK and comes from the virtualmedicalcentre.com web site
2. MRSA consumers’ document is a WA Health Department document which can be accessed here http://www.public.health.wa.gov.au/cproot/1760/2/MRSA%20Consumers.pdf
3. “Doctors should be “horrified” by their hand hygiene-studies … is an article on research in NSW from HealthAlerts website and can be accessed via this link http://www.healthalerts.com.au/news/news.php?action=fullnews&id=541
4. Ignaz Semmelweis… discovered the importance of hand-washing hygiene by medical care-givers in 1847 …

Only after Dr. Semmelweiss’ death, was the germ theory of disease developed, and he is now recognized as a pioneer of antiseptic policy and prevention of nosocomial disease.

Hope has been invited to participate in the inaugural annual Conference of the Australasian Association of Bioethics and Health Law [AABHL] in July 2010. The AABHL will replace the Australasian Bioethics Association and Australasian and New Zealand Institute of Health Law and Ethics which have traditionally held joint meetings.

Hope’s abstract submission will discuss “Bioethics and health law – a consumer perspective”.

The Conference will be held at the University of Adelaide North Terrace campus, South Australia, commencing Thursday evening and concluding Sunday.

Choice… do we have any?

Who chooses what is ethical? Who should choose? What shapes choice?

Researchers, practitioners, politicians, lawyers and commercial interests have an impact on matters that the community might consider to be their choice. How do we ensure the public is informed about and engaged with the work of bioethics? The 2010 AABHL Conference will explore questions of choice across many settings from:

· The theoretical to the practical

· Research to application

· Law to policy and practice

The Conference will bring together representatives from around Australia, the Pacific and Asia for a series of plenary lectures and contributed papers that will ensure a vibrant and exciting program.

The below article is a guest column written by Hope, that was published in the “Medical Forum WA”  magazine, Western Australia’s Independent Monthly for Health Professionals December, 2009 edition. Her article is on Page 17 and the orginal article can be accessed at http://www.medicalhub.com.au/component/option,com_docman/task,doc_download/gid,174/Itemid,228/

The GP-patient relationship is an imperfect science, with many GPs finding it hard to diagnose properly if information is not articulated correctly or withheld. Conversely, some seniors believe GPs need to take a different approach when dealing with this growing demographic in WA.

So what do seniors want from their GP? To be listened to, taken seriously and to be able to enjoy a partnership with their health provider. I believe this leads to more productive consultations and a positive outcome for both doctor and patient.

Many seniors (like me) have at least one chronic condition, some have more. This does not necessarily mean we are ill or incapacitated. Seniors need support and information, including access to resources so that we are better able to ‘self manage’ our condition in partnership with our health providers.

Having gained weight and body fat after cancer treatment I do not want to be told “it is because you are menopausal”, “because you have had children”, “it is in your family”, or worse still “go to Jenny Craig”. It is more useful to be referred to a dietician and an exercise physiologist. In this way a plan can be drawn up to achieve my goal, that is, to manage my weight, to keep fit, to reduce the risk of other medical conditions, and reduce the risk of the cancer recurring.

With the help of my GP I can set my health goals, draft an action plan, and take responsibility for my continuing wellness.

What doctors can do to make the journey easier:

1. Suggest the patient brings all medication they are taking to the consultation. An on-going review can minimise errors such as a patient taking the same drug by another name, continuing to take medication if no longer required and confusion.
2. Ask the patient to write down a list of questions to ask the doctor, and copy the answers given by the doctor.
3. Offer the patient a print-out of all medications they are taking, the reason for taking it and dosage – including any known drug reactions. Seniors often put this list on their fridge, so in an emergency ambulance officers have access to this vital information.
4. If a doctor is uncomfortable discussing a particular issue, e.g. sexuality, refer the patient to someone who is not. Many patients have difficulties in this area because of surgery, chemotherapy and other procedures.
5. Suggest the patient request a long consultation if there are several issues to be discussed, or else make two consultations. If these are bulk-billed (for pensioners) this could perhaps save time for both doctor and patient.

And what will the doctors stand to gain? Patients who are using the knowledge and support offered to better manage their health and such conditions they may have. This may result in fewer and shorter visits, more time spent achieving positive outcomes than having to listen to the same old sad story. Many seniors are ‘experts on their own condition’ and do have a wealth of experience in coping – but we do need the relevant up-to-date information the doctor can provide.

Hope Alexander

December 2009

© Copyright Hope Alexander

2009 Joanna Briggs Institute International Convention
“Ripples to Revolution: from bench to bedside!”
Adelaide, South Australia, November 18-20 2009.

Hope Alexander MPH – Community Consultant and Health Educator presented the following PowerPoint Presentation:

[svgallery name="RipplestoRevolution"]

The below article is a guest column written by Hope, that was published in the “Medical Forum WA”  magazine, Western Australia’s Independent Monthly for Health Professionals July, 2009 edition. Her article is on Page 10 and the orginal article can be accessed at http://www.medicalhub.com.au/component/option,com_docman/task,doc_download/gid,130/Itemid,228/

With the ageing population, what can the Australian health consumer expect in the way of primary health care, and by whom will it be delivered? One strategy to overcome the shortage of trained health professionals is to utilise the skills and strengths of nurse practitioners.

The article “On solutions to the shortage of doctors in Australia” states that:

• WHO estimates a current global shortage of 4.3 million health workers;

• Australia … compares unfavourably with other OECD countries in respect to doctor numbers;

• The overall shortage of doctors in Australia … is exaggerated by the disciplinary, cultural, and demographic misdistribution of the doctors relative to need and utility;

• Australia … is one of the most reliant of the OECD countries on foreign doctors; and

• An increase in spending on health promotion and disease prevention is essential.

“The majority of health professionals recognise that there is a gap in health service delivery in this country, and that nurse practitioners can contribute to filling that gap” (Cerasa, 2009).

Anecdotal evidence from patient X has a woman attending a GP surgery to have weekly dressings on her leg after day surgery. But can either of the two practice nurses reassure the patient that her wound is healing? No. Can the GP who sees the wound on an irregular basis? No, “It is OK.” What does that mean? So the patient returns to the surgeon to get a definite opinion. “Yes, the leg is healing, everything is proceeding as normal.”

If a consumer consulted a nurse practitioner specifically trained in wound care, the outcome would be much different. The skill and knowledge base would be there. Information would be given to the patient to best manage her condition: how often would dressings need to be done, for how long, and what the patient could do to resume her normal lifestyle. As a consumer, I have faith in the education and training of nurse practitioners. Many consumers have been let down by GPs who do not communicate, who do not share information and/or evidence, and who “do not want to treat old people” or “people with no money”.

As an older consumer with a chronic condition brought about by medical treatment for another condition, I would say “Yes, I am willing to consult a nurse practitioner” for routine checks and most ailments. Part of the nurse practitioner training is to differentiate between serious and minor complaints. I see their role as being similar to triage. Instead of referring a patient to a GP, it may be a referral to an exercise physiologist, a dietician, or a massage therapist.

GPs are trained in the medical model, but many consumers, particularly those with chronic conditions, and older ones, would prefer a non-drug treatment, along the lines of the New Zealand “Green prescription”. In addition, consumers find it difficult to access a GP who is willing to write an Enhanced Care Plan. Excuses given are “it takes too much time” and “we don’t get paid enough”. Consumers may well ask “But what about us?”

Hope Alexander

July 2009

© Copyright Hope Alexander

Submission to the Commonwealth Government Department of Health and Ageing on the new National Women’s Health Policy 1 July 2009

Hope Alexander MPH, Consumer Representative and Health Educator, Perth, Western Australia.

Introduction

In any proposed new National Women’s Health Policy as submitted by the Australian Women’s Health Network there needs to be a balance struck between research, prevention, and treatment and care.

For all those sick women whose treatment is determined not by gender but by class and economic disadvantage where are their voices in this proposed policy?

Where are the recommendations around Foetal Alcohol syndrome so that Indigenous children can have the best start in life?

The emphasis should show balance, not the middle class mantra of prevention education without the recognition of the suffering of the poor and the marginalised in our health system.

Recommendations

• Breast prosthesis – eligible women to be given a voucher for their prosthesis/es similar to that given eligible people for hearing aids

• A voucher for say $350 per year to attend an accredited gym to undergo an exercise program designed by an exercise physiologist for weight loss and/or weight management

• The New Zealand Green Prescription be implemented nationally

• Programs to address the issue of foetal alcohol syndrome, particularly in Indigenous women

The rationale for the recommendations

• Breast prosthesis – eligible women to be given a voucher for their prosthesis/es similar to that given eligible people for hearing aids.Although the Medicare rebate is a welcome innovation, it still leaves some women with a problem. They do not have the cash to pay upfront for their prostheses. These can cost from between $350 up to $550 each and possibly beyond. For a woman requiring two prostheses, (double mastectomy) this could mean anything up to $1000, perhaps more. For a woman whose only income is the aged pension or other form of income support this outlay is not an option.

• A voucher for say $350 per year to attend an accredited gym to undergo an exercise program designed by an exercise physiologist for weight loss and/or weight management.

For those women who have suffered weight gain and body fat gain from cancer treatments (HEAL study, USA, 1996) and possibly other drug treatments some form of assistance is required. Women on pensions and other low incomes are unable to afford gym memberships, and thus are prevented from gaining access to rehabilitation exercise.

It is recognized that chronic conditions (eg cancer and cardiovascular disease) are becoming a greater burden on the public health purse, and will continue to do so. Rather than have the Federal Government spend around $15,000 per obese person on stomach stapling surgery, a more equitable option would be to invest $350 per year per woman, for those meeting the above criteria: weight gain from cancer and other drug treatments. This is a form of rehabilitation, thus returning these women to a more fully functional and hopefully independent lifestyle.

The costs of the consultations with the exercise physiologist can be met by Medicare, under the Enhanced Care Plan (ECP). Many GPs are reluctant or unwilling to put women on an ECP. The complaint is “it takes too much of my time” and “We don’t get paid enough” (personal communications).

• The New Zealand Green Prescription (1, 2) is a program that works, and has been evaluated. Because the populations of Australia and New Zealand are similar (both having Indigenous peoples and a diversity of cultures) there appears to be no reason why the Green Prescription could not work in Australia. More important, it may well be acceptable to Indigenous women in Australia, as was the “One heart many lives”(3) program acceptable to New Zealand Maori males.
• A national program to address the issue of foetal alcohol syndrome particularly in Indigenous women.

References

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1508188

http://www.sparc.org.nz/getting-active/green-prescription/how-it-works

http://www.oneheartmanylives.co.nz/

Toward a more equal partnership between health consumer and health provider

The Joanna Briggs Institute Inaugural International Convention 28-30 November 2005, Adelaide, Australia.

Name of presenter:

Hope Alexander

Title of abstract:

Some insights into consumer participation in healthcare in relation to breast cancer, and the need for equal partnerships between the consumer and the health professional.

Purpose of paper:

The purpose of this paper is to offer insights into consumer participation in health care, specifically in the treatment of breast cancer, and to demonstrate the positive outcomes which can be achieved. This paper will also document the negative outcomes which arise when the consumer is denied the opportunity to participate in their own health care.

Summary of paper:

Cancer is a complex and multifactorial disease, especially in breast cancer, which is acknowledged as a separate condition in post-menopausal, to that in pre-menopausal women. The treatment and management of these two conditions can differ and so will the patient’s experience. This paper will offer insights into consumer participation in health care, specifically in relation to breast cancer. It will reflect the perception that many health consumers, or patients, are experts on their own condition and therefore would request health providers to respect this view, which is under-pinned by references from the literature.

Introduction:

This paper is based upon one woman’s personal experience of travelling along the journey of breast cancer from diagnosis to treatment, to recovery and rehabilitation. This period extended over three years.

As explained in a paper I wrote “All I had to learn about Chemotherapy but didn’t want to know” the journey was made more difficult and painful than it needed to be. When I had completed the six months of chemotherapy, I naively imagined that that was the end of my journey. Not so. It was merely the closing of one chapter.

This time the paper I wrote was called “Clearing the in-tray” a title given me by a very supportive friend, a consultant in her own field of medicine. She had encouraged me to manage my health condition in stages, to reduce the risk of becoming overwhelmed by it all. This was to be a very simple yet practical strategy.

I learned two important things in my journey – and these are the ones I am sharing with you today. The first one is the need for equal partnerships between the consumer and the health professional. One critique is that this is a subjective report, but how else can one measure or understand the lived experience? It is the human story, which is more likely to make a lasting impression as far as health information goes. It also demonstrates the need for the patient and their carers/family to receive relevant accurate information to enable them to better manage their own health and wellbeing in partnership with their treating health and allied health providers. The second need is for the relevant accurate information in language and format that the consumer can understand.

Literature search:

During my literature search I found several documents on how to achieve effective communication between consumer and health professionals. These will be discussed later.

I also found an extremely helpful article by Dr Jane Turner, a clinical psychiatrist in Queensland, who describes how life after cancer is a different kind of normal. I see it not necessarily being worse or better, but different. As Turner explains “People can expend on enormous amount of energy trying to be the person they were before they had cancer. This is a waste of energy because normal has changed for them.” (Cancer Council of Western Australia Inc. media release 19 August 2002, Dr Jane Turner Cancer Changes Normal Forever).

It was only when I read Turner’s article that a light was turned on for me. Now I understood why it had been impossible for me to go back to being the person I was pre-diagnosis. All the energy I had expanded had been to no avail, and what a tremendous feeling of relief to know I could focus on being the new person I could choose to be. I had changed forever, I had to re-invent myself.

As Turner so wisely informs us “For many a life-changing experience with cancer can also be a liberating experience. It allows them to reassess their lives and let go of the trivial stuff. Their resilience to life’s ups and downs can also improve”. (Cancer Council of Western Australia Inc. media release 19 August 2002, Dr Jane Turner Cancer Changes Normal Forever).

To return now to the documents on how to achieve clear effective communication it is pertinent to look at the one produced by Pfizer (2003). This document describes the “Clear Health Communication Initiative” which has arisen from the work of the Partnerships for Clear Health Communication in the United States.

This Initiative has identified that “literacy skills are the strongest prediction of health status in the United States.” Health literacy is defined by the Partnership as “the ability to read, understand and act on health information” (Pfizer 2003). These findings could well apply to Australia. As Dr David Baker, a member of the Partnership explains “Medical terms often come across to patients as if the doctor is speaking another language” (Pfizer 2003). As Baker so succinctly states:

Health information needs to be communicated to patients in plain language and in a way that is appropriate to patients’ individual background and culture. The Partnership for Clear Health Communication was formed to leverage the collective resources and expertise of its members to improve communication between patients and health care providers.

(Press release by Clear Health Communication Initiative, United States, 2003 Literacy skills are strongest predictor of health status in United States)

The Partnership has devised a way of furthering the cause of increased meaningful communication between patients and providers by:

1. Educating patients and providers
2. Developing and applying practical solutions to improve patient-provider communication
3. Conducting nationally coordinated research to further define the health literacy issue and evaluate solutions
4. Increasing support for health literacy policy and funding (Pfizer 2003).

Dr Sharon Allison-Ottey, a member of the Partnership explains why it is necessary to have the appropriate tools, because “Effective communication tools are particularly critical when people of different cultures, ethnic and racial backgrounds need to exchange information in a way that all parties can understand and respond” (Pfizer 2003). Allison-Ottey further explains that the first step will be “to help patients and providers communicate in a clear manner” (Pfizer 2003). One tool that can help this process is Ask Me 3.

Ask Me 3 (www.AskMe3.org) promotes three simple but essential questions patients can ask their providers in every health care interaction:

1. What is my main problem?
2. What do I need to do?
3. Why is it important for me to do this?

The Partnership believes that there are many solutions that cost little or nothing, are easy to implement, and don’t take much time, but “can help to effectively organize and focus patient-provider interactions in a way that can ultimately save time for the provider, improve health outcomes, and even save lives.”

(Pfizer, Press release 2003, downloaded 29/10/05).

It can thus be seen that there are already adequate tools available to assist with clear health communication, and in my opinion these tools and guidelines could well be adopted internationally.

Main body:

When I attended the medical oncology clinic I could see the pain, the suffering, the silence. This is what struck me most, the deafening silence of those whose voice is no longer heard, of those whose voice has been silenced. The image stayed with me, is with me still. I was moved to do something. I am an educated person, a sensitive person. If I found the going tough how did my fellow patients experience their condition, their treatment?

I focused on two main issues. One was the perceived lack of information about breast cancer, both around diagnosis and treatment options (specifically medical oncology), and more importantly the often serious and debilitating side effects. I found the lack of information, and the perceived reluctance to even admit such side effects did occur, let alone discuss them with a consumer, to be quite abhorrent.

The following are examples of Best Practice and Worst Practice I encountered in my personal journey through breast cancer:

First I wish to state how well I was treated by the surgical team at the Sir Charles Gairdner Hospital in Perth, headed by Mr Richard Nauton-Morgan, formally from the UK. The surgeon explained the procedure he would use (R Modified Mastectomy plus axillary clearance), and why, which was to achieve the best outcome for me. I was treated with respect, given the information I needed, had my questions answered in plain English, and encouraged to make choices, for example to decline the pre-med injection, which I did. The surgical registrar told me “In medical school we were told to listen to our patients,” which he certainly did.

The above experience, plus the excellent care I received from all the staff on Ward G71, enabled me to make a speedy recovery from the surgery, performed on 28 October 2002, Australian Breast Cancer Day.

I expected the same high standard of care and professional behaviour from the medical oncologists at B8 Clinic at the same hospital. This was not my experience. The following are excerpts from a formal letter of complaint I wrote to the hospital on the 2 February 2003. To date none of these issues have been resolved to my satisfaction.

“To date, no oncologist has sat down with me and explained my prognosis with or without chemotherapy.

“To date, no oncologist has explained to me the chemotherapy drugs I am, and will be, given, the risks to me, the benefits to me, the side effects, both short and long-term and how to overcome them.

“I was given two documents (patient information sheets) one of ten pages and one of eleven pages in length, by the BSIRG 005 and 006 Clinical Trials Co-ordinator, who I understand is not medically trained. No oncologist discussed any of the information contained in these documents with me.

“Both the trial Co-ordinator and the oncology registrar put pressure on me to go on the trial. The Co-ordinator told me I “had cancer cells in my blood” during a telephone conversation. I asked her “Where is the evidence?” I telephoned her the next day and she denied saying this. The Co-ordinator also changed some of my outpatient appointments without my knowledge and consent. Her explanation was that I had to be on the trial by Christmas Eve.

“The oncologists abrogated their responsibility to me by getting the nurse to tell me that my hair would fall out within three weeks of starting chemotherapy. It was the nurse who handed me a sheet with the drugs and the side effects (not all) on it. The drugs that were to be administered to me were high-lighted.
“I had to ask the oncology registrar what drugs I would be on, how they would be administered, and over what time frame. He informed me that I would have a treatment every three weeks for six months. This was the 4 December, the day before I would start chemo.

“I was given no time to prepare myself mentally or physically for this, which came as a great shock. Why could the oncologists have not told me at an earlier clinic appointment that I would be having chemotherapy over six months? The surgeon gave me ten days to prepare myself, which allowed me to develop a positive attitude and maintain it.

“When I told the Head of the Department that the chemo drugs were causing me severe constipation he said “Just take what you usually take,” I told him that I don’t “usually take” anything. It was very difficult for me to make him take me seriously and prescribe something.

“On 17 January another consultant told me that I was “silly” not to go on the trial. When I told him that the drugs (I believe it was the steroids) were preventing me from sleeping he said “it won’t hurt you” and told me to “do my housework at night.”

During the process of chemotherapy, I became an expert on my condition. I appeared to have experienced every known (but not disclosed to patients) side effect of the various chemotherapy drugs, even the unusual side effects.

Some of the side effects can be quite unpleasant and debilitating. What made it harder to tolerate were statements in the Chemotherapy and You patient information booklet published by the Cancer Council of Western Australia. These included:

“Most anti-cancer drugs cause no discomfort – - -

“Chemotherapy has increased the survival of many cancer patients and has cured some cancers

“Contrary to popular ideas chemotherapy is not always highly toxic and some quite gentle forms are used.

In my experience (over six months) two of the above statements are untrue and grossly misleading. When I read these statements, on pages three and four, I felt that there was no point reading the rest of the booklet as it was neither factual nor helpful. Just as well, as I read later on page eighteen that “Feelings like depression and hopelessness are not uncommon at this time.” Fortunately the Chemotherapy and You booklet was revised in 2004 with consumer input.

My experience of chemotherapy can be expressed quite succinctly as “the loss of the healthy self.” Reading Dr Jane Turner’s article (2002) referred to earlier was a very important healing exercise. Later I discovered that there are three types of chemotherapy, only one of which may cure cancer. They are curative [usually associated with childhood leukemia], adjuvant, which I had [back-up after surgery], and palliative [keeping a patient comfortable].

Lorraine Cowley informs us that “Women receiving adjuvant chemotherapy for breast cancer over-estimate both their survival chances and the reduction in risk which this treatment offers (Ravdin et al 1998) perhaps because its benefits have been oversold.” Cowley, Journal of Advanced Nursing, Volume 31 (2). February 2000, 314-321

I was told that after I completed the chemo I must go on the “hormonal” treatment Tamoxifen. And what does Tamoxifen do? “It is thought that in some women – - – oestrogen is driving the cancer to grow. Tamoxifen blocks the effect of oestrogen on the cell – - – In most cases, the cancer stops growing, even though it does not kill the cancer cells – - – The most serious side effect is the slightly increased risk of cancer of the uterus (or endometrial carcinoma). (A Consumer’s Guide: Early Breast Cancer, from National Breast Cancer website www.nbcc.org.au, updated 19 February 1998).

By the time I was ready to start Tamoxifen I had sacked my other oncologists. My new oncologist has excellent communication skills and fully informed me of the possible side effects and implications of taking Tamoxifen over five years. I trusted his judgment and was quite happy to follow his directions about this medication. To me it is an equal partnership which places us both in a win win situation. This oncologist was able to reassure me thirteen months after ceasing chemo that I was now clear of cancer. Many oncologists ask the women to wait for five years before they will offer any reassurance.

During my research I discovered that the first chemotherapeutic drugs were developed during the 1940s and were a spin-off of the work carried out by the Nazis to develop methods of chemical warfare (Professor Jane Plant, 2000, p.47). Plant also informs us that “some tumours quickly develop resistance to chemotherapy drugs” (ibid). This could explain why many of the cancer patients I meet tell me “the chemo drugs didn’t work, now they are trying another one.” They are often having radiotherapy as well. How many people know that some of the drugs used in chemotherapy are thirty years old, as, I believe, is Tamoxifen

This is why I feel an equal partnership between the consumer and the health professional is paramount.

As reflected in my interview for the Joanna Briggs Institute publication PaceSetters (in November 2005) “Consumers know that doctors have a lot of scientific training, but it is about sitting down and telling us exactly what’s happening. What’s wrong with me, how do I get it fixed, what do I need to do, and letting us ask questions. The consumer needs to know that they can ask questions and they are not necessarily in the wrong. Even if we’re educated we need people to go through it slowly, in plain English”.

It is not a case of the consumer telling the doctor what to do or not do. What many consumers need and want (and I am mindful that some consumers, quite rightly so, want the doctors to make the decisions for them) is accurate information relevant to their particular individual case. They need to know the options they have, the choices, or lack of, in order to give informed consent to any such procedure as may be required, or suggested. Only in this manner can the consumer participate in their own health care and wellbeing. The decisions about treatment and so on come out of the partnership.

The doctor is advising, giving information and listening to the patient, asking questions, clarifying that the consumer (or carer) fully understands. Then the patient asks questions, seeks answers, has fears allayed. The decision becomes a product of the partnership, and both parties are in a win-win situation. My example of this is my new oncologist discussing the benefits and the side effects, and the minor risk of taking Tamoxifen over five years.

Conclusion:

In conclusion it can be seen that a lack of communication, or ineffective communication between consumer and health professionals can make a patient’s experience of breast cancer more difficult and painful than it need be. This leads to further difficulties to overcome.

Not only does the patient have to recover from surgery and chemotherapy, but she has also to learn to cope with, and manage a whole raft of new conditions. This is what is meant by the term “the loss of the healthy self”. A patient naively believes, because she is not told otherwise, that she will be able to resume her normal life soon after the treatment is finished. Not so. This is why I found it helpful, and therapeutic to record my observations at the time, so that I could capture the essence of these emotions. I knew that I would have to deal with these emotional responses at some time, in order to return to my optimum state of health and wellness.

Turner’s article was particularly helpful in achieving this. Therefore, imagine the shock and surprise when I discovered that Turner’s article (a press release), had been removed from the Cancer Council Western Australia’s website. The Manager of Education Services could offer no explanation. Here was a valuable tool for cancer patients, written in plain English, addressing a very important, perhaps the most important issue in cancer recovery and rehabilitation, being withdrawn from the very people who need it.

The Pfizer (2003) document, and their Ask Me 3 is also a very important tool in the journey through cancer. Again, it is addressing many of the issues patients face. There is an awareness that different patients need to have their health information in different formats and styles to cater for differences in culture, language, literacy levels and so on. One important point stressed is the awareness that even well educated patients will benefit from information delivered in a plain basic format.

What is most important to a woman being diagnosed and treated for breast cancer? To be treated with respect, and this includes both her mind and body. The surgeon said to me “You don’t have to be brave every day.” The anaesthetist fleetingly touched my shoulder as he started the general anaesthetic, saying “We will look after you”. A gentle word, a fleeting touch, enables a connection to be forged thus creating a healthy and equal partnership between the consumer and the health professionals.

Thank you very much.

Hope Alexander

November 2005

© Copyright Hope Alexander – All Rights Reserved