Hope Alexander MPH

Archive for the ‘Interviews’ Category

Hope received a mention and congratulations in the Australian Federation of University Women (WA) Inc newsletter, for August 2010. Copy of article below.

Media: August 2010 AFUW(WA) Newsletter article

10 Best Questions for parents to ask a child obesity expert – Focus Group

Below are Hope’s notes from the Focus Group.

I did query the title – my suggestion would be a consult the family doctor BEFORE going to see a “childhood obesity expert”, whoever that may be.

All present agreed on the first question “is my child too fat?”

In the un-ranked questions I asked “Does my child need a medical assessment?”. The reason being that a GP can rule out any underling medical condition.

A child may be fat for reasons other than poor diet, lack of nutrition/exercise etc. I was the only person who saw this as an important step. I did this in real life, taking one of my girls to the GP because she was too chubby and chunky at 8 years old.

I was advised to give her smaller portions and later as a teenager she took up swimming and at 14, I got her enrolled in a women’s basketball team. She ended up as an adult with a beautiful figure.

10 Best Questions for Parents to ask a child obesity expert

1. Is my child too fat?
2. What can I do as a parent to help my child have a healthy weight?
3. What can I do to prevent my child becoming obese?
4. What food should I be giving my child and how much?
5. How do I provide a nutritional diet on a budget?
6. Why is my child fat?
7. How could I motivate myself and my child to do more physical activity and make healthy food choices?
8. How much exercise should my child get?
9. Where can I get appropriate programs?How can I lobby the government or food companies to limit the availability of unhealthy food choices?

Other questions not ranked in the top ten

1. Where can I get information about obesity?
2. Do I need to get a medical assessment by a GP?
3. How can I make my child more comfortable about their weight?
4. How can I limit my child’s exposure to unhealthy food advertising?
5. What are the effects of childhood obesity?

Norman Swan on The Health Report on ABC Radio National, 10 August 2009, interviewed Anne McKenzie who is a consumer advocate in the School of Population Health at the University of Western Australia, Hope Alexander, a consumer member of their Research Advisory Panel, and Kos Sclavos, president of the Pharmacy Guild of Australia. The topic of discussion was “Labelling of medications dispensed by pharmacists”.

Labelling of medications dispensed by pharmacists

“Health consumer advocates have uncovered what they feel might be an unacceptable level of pharmacists dispensing medications with ‘use as directed’ or equivalent on the label. They argue that this is dangerous and should not happen.”

The Health Report transcript can be read here:
http://www.abc.net.au/rn/healthreport/stories/2009/2647591.htm

The Health Report transcript can be listened to here:
http://mpegmedia.abc.net.au/rn/podcast/2009/08/hrt_20090810_0841.mp3

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”.

Media release on New Opportunities for Indigenous Women course

NOW Women have the opportunity to learn for their community at Swan TAFE, written by Lisa O’Rourke in July 2004.

The success of a Course in New Opportunities for Women (NOW) for a group of Indigenous women was celebrated at a function held at the Gwynne Park Primary School(Cultural Centre) on Wednesday 30th June.

The program is a community initiative which aims to provide women with skills that can be passed to their children. The children are seeing school as a positive place because their parents are involved and this has had a beneficial impact on the whole school.

Through a partnership with the City of Armadale and Gwynne Park Primary School, Swan TAFE Armadale Campus administers and delivers the training at facilities provided by Gywnne Park Primary School. The City of Armadale is providing funding for fees and SGIO is sponsoring the course by funding the wages for two child care workers to allow women with children to attend.

The purpose of the function was to demonstrate the success of the program, displaying student work and photographs of participants working in various modules. Students were available to discuss their achievements with guests.

The function was attended by the Hon Alannah MacTiernan, MLA, Member for Armadale and representatives from Swan TAFE, Gwynne Park Primary School and the City of Armadale.

The Hon Alannah MacTiernan was excited about the program as it presents an otherwise unavailable opportunity for groups of women who are ambitious to make a change to their lives and the lives of their children.

“We now have such a strong centre here with a strong focus that I’m sure it is here to stay. This will ensure that people who haven’t had the opportunities to learn now have,” the Hon Alannah MacTiernan said.

“We must not set the bar low – we want our people to achieve high standards. There is the ability for us to seize this opportunity and not take second best”.

Students of NOW will complete four courses over the 17 week delivery period including Personal Management, Personal Health and Safety, Effective Communication and Computing.

The program also instills pride, builds confidence and improves networking and communication opportunities for participants. Contributing to the benefits of lifelong learning, the program will be the starting point for developing personal and professional goals for its graduates.

With the lecturing staff specialists in their fields, students of the NOW program will be receiving the highest possible quality of training from respected industry and training experts.

“I am enjoying delivering the NOW program and seeing how it is positively contributing to women and their communities,” said Hope Alexander, one of the lecturers.

“The NOW initiative is unique in that it is a collaboration between the city of Armadale, the school, parents, industry and Swan TAFE,” said Mike Scally, Program Manager of Community and Cultural Services at Armadale Campus of Swan TAFE.

“It is through the combined expertise, energy, support and commitment from these groups that community needs will be realised.”

The pilot program, now in its seventh week, is well positioned for success with similar programs, delivered by the College currently operating with optimal retention rates and graduate outcomes.