Hope Alexander MPH

Posts Tagged ‘oral’

The Health Consumers’ Council will be holding a Community Forum on Oral Health/Dental Services on Tuesday, 9 November 2010. To RSVP for this event, contact Caroline at 9221 3422.

Event: 9 November 2010: Community Forum on oral health and dental services

Today Hope submitted her abstract for the Australian National Conference on Evidence-Based Clinical Leadership. The title of her paper is “Chasing the rainbow – the difficulties experienced in accessing age and condition-specific programs”. These programs include oral health, hearing services and Enhanced Care Plans. The conference is to be held in Adelaide, one of Hope’s favourite places, in November.

Hope has expressed an interest in participating on the Australian Government Department of Health and Ageing – International Dental Graduates Assessment Process Review Committee.

“This committee will act as a national expert reference group on assessment processes for International Dental Graduates.  It will provide expert advice to the Health Workforce Principal Committee on the issues and barriers associated with International Dental Graduates achieving full registration in Australia; the effectiveness and efficiency of current assessment processes, including implementation of the Public Sector Dental Workforce Scheme; and requirements for establishing a competent authority model for mutual recognition of dental qualifications gained overseas.

This work relates to the Consumers’ Health Forum of Australia interest in the health workforce.

The consumer representative may like to consider the following objectives:

• Provide a consumer perspective on issues relating to the assessment of International Dental Graduates.

• Advocate for consumer input and participation in the implementation of any model for recognition of dental qualifications gained overseas.

• Consult with, and keep CHF members informed of this work and the consumer issues.”

I have been the consumer representative on the Oral Health Centre WA (University of Western Australia School of Medicine and Dentistry) where dentistry students and oral hygienists are trained, for some years now.

I initiated the process of getting a mouth care information sheet for patients undergoing cancer treatment in WA and with the two Oral Medicine specialists who worked on it with me, was granted the Health Consumers’ Council WA Award of Excellence in 2006.

I regularly act as a patient for the Oral Medicine students in the examinations.

I have been a user of dental services from the age of 4 years (in New Zealand, where all children received free dental care until the age of 16), both as a public, then private, and now again, public patient.

I have been lobbying for reform in the oral health field for some years now.

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.’