Hope Alexander MPH

Posts Tagged ‘cancer council’

WA’s Nutrition, Physical Activity and Healthy Weight Congress, “The Weighing Up Our Future” Congress is a partnership initiative of the Heart Foundation, The Cancer Council WA and Diabetes WA and is proudly funded by the Department of Health, Western Australia.

At the Health Consumers’ Council (Western Australia) annual Christmas morning tea on 6 December 2006, Hope Alexander, former HCC Board member and member of the Health Issues Group was presented with an Award of Excellence.

The Award, presented by the chairperson of the Health Consumers’ Council, “recognised the outstanding work done by Hope Alexander, Dr Gareth Davies and Dr Nick Boyd, (both from the Oral Health Centre, Perth, Western Australia), on the issue of Oral Health for people with cancer, enduring chemotherapy”.

This achievement well demonstrates Hope’s philosophy of “patient-centred care”. It is powerful evidence that it is possible to develop “more equal partnerships between the health consumer and the health provider”. This is the focus of Hope’s Masters research.

The Mouth Care Fact Sheet was published on the Cancer Council WA web site in October 2005. Until now, there were no relevant information sheets for patients undergoing chemotherapy and radiotherapy treatment. Hope researched and found a suitable information sheet produced by the Newcastle Hospitals in the UK and had the information reviewed by two senior oral health specialists in Perth to ensure it was accurate and relevant to Western Australia.

This initiative was granted an award of excellence by the Health Consumers’ Council WA in December 2006. Below are Dr Gareth Davies, Hope Alexander and Dr Nick Boyd receiving the award.

The “Mouth care during chemotherapy and radiation treatments” booklet can be viewed and downloaded online from the Cancer Council WA at this link http://www.cancerwa.asn.au/resources/2009-05-14-mouth-care-during-chemotherapy-and-radiation-treatments.pdf

Event: 6 December 2006 - Award of Excellence - Photo Courtesy of Medical Forum WA Magazine

Hope springs eternal

The interview was conducted by the Joanna Briggs Institute (Adelaide) journalist (a former nurse), for inclusion in the November 2005 issue of PaceSetters, a publication which is sent to the 41 Joanna Briggs Institute collaborating centres around the world. Story by Nic Rowan.

When Hope turned sixty-four she was diagnosed with early breast cancer. Always passionately interested in the consumer perspective on public health, this gave her a very personal interest. During her illness she came to believe that while the health consumer is the person who should be at the centre of any model of care, this is not always the case.

Since that realisation, Hope has worked tirelessly to make the voice of the consumer heard. She is also completing a masters’ degree in public health. ‘I think my thesis topic will be something to do with consumer participation, and also trying to make a change’, she says.

One of the most frustrating aspects of Hope’s journey through the bewildering world of cancer was trying to find information about the effects and side effects of treatments and medications. ‘Mostly [health consumer] information wasn’t written at all and I had to go searching the Internet and asking everybody and looking up books and trying to find out’, she says. ‘Very few people would give me the information.’

Particularly lacking was information on the chemotherapy-related oral health problems she suffered. Hope is very proud of the resulting oral health booklet she was instrumental in producing, which has just become available to the public.

The process of getting the booklet developed was, says Hope, very tiring. ‘A friend of mine suggested I go to oral health [specialists], so I wrote a note to them on the back of the letter the oncology people had sent to me suggesting that chemotherapy did not affect teeth.

The oral health specialists said that chemotherapy can affect teeth, so I asked: what can I do as a consumer? I said “I’m plugging for this oral health booklet and would you be able to review it?” I got a copy of a document from the NHS in England, to use as a model. So that’s what happened.

‘I spoke to the [West Australian] Cancer Council. I rang the Director of Education said “look, I’m not going to go away, this issue’s not going to go away. What I’d like is an oral health sheet”. I was a very private person, before my cancer diagnosis. I was 64 when I had my surgery, and I thought, well I’m old enough now to speak up and what can they do to me? I mean, they can’t sack me. It’s very difficult to shut up older people.’

‘I got the Cancer Council to send the booklet to the oral health people who looked at it, reviewed it and sent it straight back. These people are the experts. It was hard work because I had to be a liaison person, but it was really worth it.’ That booklet is now available on the West Australian Cancer Council website for the public to access.

Hope was also surprised at the lack of information in the health care system that had been provided for consumers. ‘I wrote a lot of papers’, she says. ‘One was “All I had to learn about chemotherapy but didn’t want to know”, and another was “Clearing the in-tray”. When I finished chemo I thought that was the end of it, but it was just another beginning. So I kept writing articles and putting them in newsletters such as the Health Consumers’ Council WA’s ‘Health matters’ and women’s newsletters, just so people would know. I gave some copies to my doctors and other people so they would know how it was from the other side.’

One the many ways in which Hope communicates the patient’s perspective is to address industry groups. ‘I talk to trainee medical receptionists here in Perth. The Cancer Council does their official spiel about what they do and then they let me loose for half an hour, on One Woman’s Personal Journey, which is when I get to tell [the receptionists] how it was for me.’ Hope talks to them about the view from the other side of the desk.

Hope is an active member of a range of consumer groups. ‘I’m just passionate from the consumer perspective’, she says. ‘I got involved with the Health Consumers’ Council WA (HCC). It was set up in 1994, and is funded by the State government to give consumers an independent voice.

‘The HCC runs a monthly Health Issues Group where consumers can raise issues of concern to them, or issues currently in the news, either for action, or to seek more information. The HCC has 46 health consumers sitting on 133 committees at State and national level.

‘The Cancer Council WA has 52 consumers in its Consumer Participation Program, and we bring current and important consumer issues about cancer to the manager of this program, so that he can act on them, or refer them to an appropriate person, or take them higher up, as he did with my idea for the oral health leaflet.

‘Both these groups’, she says, ‘encourage and assist consumers to be more active in their own health and wellbeing. They are very good working models of participation and empowerment.’ Participants also get free ongoing training so they can be more effective in their work. The HCC and the Cancer Council collaborate on the training.

The groups can be very effective. ‘The Cancer Council consumer group were involved in a focus group on a new multidisciplinary model for cancer care, and our comments were noted and taken seriously. One request was to have two or three consumer/community representatives on the new Cancer Advisory Group (for WA) to advise the new Cancer Network WA, which will oversee all cancer services in the State.

‘We also asked that the word tumour, as in Tumour Network, be changed to denote the area of the cancer, eg Head and Neck Network, Breast Network. The consumers felt that “tumour” was a very negative term, conjuring up an unpleasant picture. We were quite happy to use the organ name, as it was a more neutral term.

‘This underpins how important appropriate communication is. I was told by the co-author of the report on the multidisciplinary cancer model that “clinicians around the world use the term tumour network; it’s what they’re used to”. I asked, “Why do the consumers have to fit in with the clinicians? Why can’t they get used to a new term?”’

Something that makes Hope particularly angry is emphasis on survival at the expense of quality of life. ‘They’re always talking about survival. Just giving us an extra five years isn’t so wonderful, if you’re incontinent and your teeth are falling out and you can’t feel anything from your waist down. I ask why would you want to be alive? And [health professionals] just look at me and some of them are so stunned, they haven’t got their head round it, because [to them] it’s all about quantity. But quality of life is far more important than years.

‘People look at me and say, but you should be grateful, and I say, don’t ever tell me I should be grateful I’m alive.’

Hope was pleased to learn that she would be presenting at the 2005 Joanna Briggs International Convention. She says of her paper, ‘It’s about the need for equal partnership between consumers and their health providers, meaning that there’s communication on the same level.

‘We know that doctors have a lot of scientific training, but it’s 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’.

Even though most patients are not medically trained, says Hope, there are advantages in providing information. Informed patients manage better if they know what they’re up against.

And the future? ‘Hopefully it will be more of the same. I got myself invited to the multidisciplinary cancer conference. They want to bring in multidisciplinary teams where the patient is in the middle of their model and they have oncologists, psychologists, social workers and other health professionals all round the edge. At a focus group I asked where is the dentist? Where are the dental people? So they took that on board.

‘Consumers, particularly if we band together, can have our voice heard. We’re the ones who are having things done to us. We need choice.’

Humour helps at work

Hope was interviewed by Gab Knowles for the ‘Western Suburbs Weekly’ (Perth, Western Australia), and the interview was published in the issue of 31 August 2004.

Title of article: Cancer Council (WA) project – “The help of business owners and employees is being sought for the development of guidelines on how best to manage cancer in the workplace”.

Title of interview: “Humour helps at work” … Hope Alexander says it was the ultimate test of trust to tell work colleagues she had breast cancer. “If you do not tell them you are robbing them of that chance to help”.

An oncology nurse from one of the private hospitals got in touch with Hope. She had pinned the article on the staffroom notice-board. She said Hope was “an inspiration to all”.

Hair loss due to cancer treatment

One woman’s experience.

When I was asked by the Cancer Council (Western Australia) to review their booklet on Cancer and Hair Loss, I did have a few misgivings. However, it is very well written, and I could not find anything that needed to be changed, included or left out. In addition, I sent in a copy of my reflections of my own personal experience, which is written as a journal entry. Each woman’s experience will be different, because we are all unique.

When the nurse told me my hair would fall out in 3 weeks, I called in at the wig salon on my way home from chemo. I had a voucher from the hospital. It did not cover the full price, and I was not covered for it by health insurance, as I had not been a member for 5 years. I did check. I decided to buy the best looking (on me) wig, and not to be influenced by the price. It was as if “I deserved a good wig, not just a make-do one.” Pride and self-esteem played a big factor. I did not want to let myself down, by getting a cheap wig, and I felt a wig from the Wig Library would smack of “second-hand Rose”. I had to boost my confidence somehow. Later, I did go and get a wig from the library, then I had two, of different colours and styles.

Even though I expected my hair might fall out, I was devastated when the nurse told me. I just broke down and literally screamed  “Don’t tell me, I don’t want to know! ” Then after I had a crying jag, I thought ” Well, better do something about it”. So I went off to the wig salon after finishing the chemo session. One of the staff was a hairdresser, one a nurse, and honestly, I came out of the salon feeling 150% better than when I went in.

I had this crazy notion, because it was coming up to Christmas, that I had to buy the wig there and then. I had this vivid picture of myself wandering round Perth over Christmas, bald, because all the wig salons had closed for the holiday period! I had been very distressed when my hair started falling out. I would wake up with a mouthful of hair, and my unit had hair literally everywhere, worse than a moulting dog / cat ! I took myself to my hairdresser and had it all cut off, not with a razor, but with scissors. That alone was a huge leap of faith. It was all done so compassionately, so gently, it was not quite as bad as it may have been.

And yes, my hair did grow back, eventually. I had jokingly said it would grow back as dreadlocks, and red.

Hope Alexander

July 2004

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