HM Medical Clinic

Thealopeciologist.1.2014

Autumn 2014
Patient and Family Centred Care
‘the alopeciologist' May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au

Mastering the art of living with alopecia = ALOPECIOLOGY
Make your own word pictures for free. Go to taxedo.com or wordle.com This May 2014 edition of the AASA news- ety of challenges. In our ‘What can I do?' sec- Terri gave an honest and thoughtful letter, has two themes. One is the concept tion on page 8 where we've got some relevant presentation from an alopecia patient's perspec- of ‘patient and family centred care' and helpful resources.
tive and her comments have already resulted in a the other is an extension of our previous discus- number of changes in the way the Skin and Can- sion of the important but rarely discussed com- On March 13th AASA members Terri cer Foundation clinics work, such as improving plexities around wearing wigs. We have also Beardwood and Pat Crotty participated in a staff the information that patients receive before their included a new and interesting initiative from the development session at the Skin and Cancer first appointment. A summary of the session is UK called ‘Option Grids'.
Foundation. The session was led by Dr Catherine on page 6.
Crock of the Royal Children's Hospital. Dr In the August newsletter last year we Crock is the Executive Director, And finally we have some background featured the research being conducted in Scot- to the notion of ‘alopeciology' and land by Karena Moore-Millar and her col- nd is probably best known as th ‘alopeciologist' (below) and a little more about leagues. Karena's focus has been on the ‘Rosie the Riveter' of the iconic image on the experience of being a wig-wearer and now some Dr Crock spoke about the worldwide move- cover (page 7). Her slogan of that research has been published. Read the ment towards engaging patients and their summary on page 5.
families along with health professionals in im- "WE CAN DO IT!"
proving the medical care which patients receive One of our committee members, and the resulting satisfaction levels for health is, amongst other things, an encouragement to Monique Cormier writes of her own experience.
care professionals. Dr Crock and her colleagues people with alopecia to work with health profes- She has become skilled at responding to different have been able to apply this at the Royal Child- sionals to make services more patient and family situations and people when talking about her rens' with some quite inspiring consequences.
wig. She writes about how she negotiates a vari- What is alopeciology and what is an alopeciologist? The first use of the term ‘alopeciologist' we can identify, comes from a 2012 course for doctors in Canada conducted by Dr Jeff Donovan, a dermatologist. The course was called, "Basic Skills for the Developing Alopeciologist".
Alopecia Areata Support Association Inc
Vic
What a great word! But who better to be experts in alopecia, than the people who live the experience every day. That's No. A 0017172 Y
Wikipedia tells us that ‘ology'is a ‘combining word ending', that is used to name a science or a body of knowledge, such as theology or sociology. What better word to convey what we become experts in (and can teach others about), than alopeciology. Terri Beardwood's presentation to health professionals at the Skin and Cancer Foundation is surely a great example of the practice of alopeciology! Tel: (03) 9513 8580 (Alopecia Helpline)
[email protected]
"Alopeciology" then, can be seen as a positive statement about the mastery of an area of knowledge (living with alopecia) along with of a set of related skills. Some of those skills are on fine display in this issue, in MoniqueCormier's article and in Karena Moore-Millar's work. So, welcome to ‘the alopeciologist'! It's all about ‘alopeciology' -mastering the art of living with alopecia! We can do it! ‘the alopeciologist' May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au

to tell, or not to tell.
everyone would be able to tell that surprised, but they don't act it was a wig anyway and I thought shocked. They seem genuinely in- it might be good to do a bit of terested and ask intelligent ques- awareness raising about alopecia.
tions about both alopecia and the In addition, I thought that if I was wig, and are complimentary about planning to change my hair style how the wig looks. These encoun- fairly often, that an upfront expla- ters leave me feeling self-confident nation would prevent odd stares and secure in my relationship with and awkward questions. So began others. Luckily, I would say that what I now think of as my social about half the people I have told experiment with telling people that about my wig react in this way.
Monique Cormier re- I have alopecia.
searches and teaches at Melbourne Law School My ‘script' for telling people goes In between the ideal and the awk- where she is undertakingher PhD in internatio something like this: I usually wait ward are what I consider to be the criminal law. Monique until someone comments on my ‘annoying' responses. Ironically,these are most often conveyed by has had alopecia for 15 hair and then I say "actually, I wear close friends and family who don't wigs. I have an auto-immune con- always feel the need to filter their dition called alopecia which causes commentary. They can range from To tell, or not to tell…
my hair to fall out". I then explain being critical of my wig: "Hmmm, that it's not painful or life threaten- I think I like your other wig much I began wearing wigs about three ing, and then reassure the person better" to insensitive comments years ago. I had just turned 30 I've told that I'm used to it, and such as "you're so lucky to be ableto wear wigs – I can't do anything and for me, the decline from a few that they haven't inadvertently with my hair". Possibly the most patches to what has now become made me reveal a shocking secret. I annoying (but well-meaning) are alopecia universalis was a twelve try to be quite matter of fact about from people who want to help: year process, so I was able to psy- it. The reactions to this revelation "what causes alopecia? There must chologically prepare myself for the be a reason for it. Are you stressed? prospect of becoming a wig wearer.
Have you tried rogaine/shampoo I thought of it as an opportunity to The ideal…
without sodium laurelsulphate/scalp massage/positive try out new hair styles and colours Let me begin with the ideal reac- and decided that I would tell people tion to the announcement that I am that I was wearing a wig. I chose wearing a wig. This occurs when medicine/vitamins/this cure that I this course of action because I was the person I have told reacts with read about on the internet/ head convinced in those early days that empathy, but not pity. They may be stands to let the blood circulate to Alopecia Areata Support Association Inc Vic In 2013 the British Medical Journal said, ".partnering with patients must be seen as far more than the latest route to healthcare efficiency. It's about afundamental shift in the power structure in healthcare and a renewed focus on the core mission of health systems. We need to accept that expertise in health and illness lies outside as much as inside medical circles and that working alongside patients, their families, local communities, civil society organisations, and experts Tel: (03) 9513 8580 in other sectors is essential to improving health".
British Medical Journal 2013;346:f2614 ‘the alopeciologist' May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au
"My favourite reaction to a wig change: One day I went from short blonde, to long and red. A male colleague squinted at me and said "something's different… did you get a haircut?" your head/medication that works than for her to think that I spend an now far more discerning about who for other auto-immune condi- hour every morning styling it. After I tell, and usually only change my tions…?" You name it, we've all the meeting, I caught up with the hair style around people who know girl and told her it was a wig, that I I wear wigs, or every six months at had alopecia. She seemed okay work. Of course I would still pre- with my explanation, but that was fer to be open and tell people about And then of course, are the the last time I ever spoke to her. my alopecia, but I do find myself awkward reactions. Unfor- She completely avoided me after being a little more evasive in cer- tunately I've had far more that. I don't know whether she was tain situations.
of these than I anticipated when I embarrassed, or thought it was an started telling people that I wear a odd thing for me to tell her, or was wig. For example, when I first told perhaps freaked out by my revela- I try to think about it from their perspective, and I wonder how an older woman that I work closely I would have reacted before my with, she just looked shocked and own experience with alopecia if kept asking me if I was okay. It's In another notable encounter, I ran into an acquaintance – a someone told me they were wear- been three years now, and she still young, brash, confident male. I ing a wig. There are so many things doesn't like it when I mention the was wearing a completely different that those of us with alopecia have word ‘wig'.
hair style from the one he was used to adjust to and become adept at to seeing, and he went on and on dealing with, and telling people For a while I was wearing a about how he really liked my previ- about our condition and wigs is a curly wig and a girl my age ous hair, and kept asking why I skill that requires judgment and commented on my hair and changed it. I didn't feel comfort- strategy. And much like the condi- asked whether it was natural. At able explaining to him at that mo- tion itself, the responses remain that point we were in a seminar ment about it being a wig because with about six others, and so rather he was with someone I didn't than announcing that I wear a wig know. Instead, later on, I wrote him in front of people that I didn't an email to explain. I didn't hear know very well, I just said "no, it's anything back for a week, but then not natural" because let's face it, a received a sweet, very sheepish re- synthetic wig is as unnatural as it sponse, in which he apologised pro- gets! This girl then went on to say fusely for his behaviour.
how she could never be botheredstyling her hair every morning andhow I must spend so much time on No doubt such stories are common for those who it. I would far prefer that she know have experimented with that I wear a wig and that my hair telling people about their wigs.
takes literally two seconds to put on Given my varied experiences, I am Alopecia Areata Support Association Inc Vic "It has been said that healthcare won't get better until patients play a leading role in fixing it. We agree and look forward to helping drive the patient revolution on". Tel: (03) 9513 8580 British Medical Journal 2013;346:f2614 ‘the alopeciologist' May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au

‘Concealing hair loss is thus not an end point; it is the starting point for individuals in a life without hair'. This is one of the cover images from
our Facebook page.
Note our new web address.
In our August newsletter last ing a wig. In other words, wigs may Probably most women Should wigs be treated like
year, Karena Moore-Millar gave ‘fix' one problem, but create others.
with hair loss, when it is beyond other prostheses in the context
of ‘rehabilitation'?
us some great text and images being disguised by rearranging a explaining her research into the Karena and her colleagues hairstyle, will choose to wear a wig In a small study of women with ‘wig-wearing'experience. The inter- point out that the wig-wearing alop- and the researchers suggest that it's AA in Japan, wigs have beenshown to improve the quality of national journal ‘Body Image' has cia life is a type of ‘impression not enough to tell someone to get a life of women with alopecia.
now published some of the research management' that everybody does wig and get on with their life. Pro- (Shigeki et al 2012) .
that Karena did for her PhD. It is an to some extent. We dress up differ- viding good information about what important and interesting article ently for some occasions, we may women can do next and who can This study was conducted in thecontext of ‘rehabilitation'. This with a delicious double meaning in be in some roles where we need to support them in their complex read- perspective helps us ask, what the title - "Can you pull it off? Ap- be authoritative and in others where justments and management of social similarities and differences are pearance modifying behaviors being authoritative would make a interactions should be a basic part there between for example, am-putees as they adjust to life with adopted by wig users with alopecia very bad impression. The authors of good care.
an articial limb.
in social interactions".
believe that the information fromthe study demonstrates wig-wearing When better understood, What would a hair loss rehabili- A central issue of interest creates ‘a huge interactional and the complexities of the alopecia life, tation program be like? for the research group was the pos- personal burden' and that ‘Conceal- can be the basis of better quality sibility that the current medical rec- ing hair loss is thus not an end care, support and headwear prod- Alopecia Areata Support Associa- ommendations to use wigs as an point; it is the starting point for in- ucts for people affected.
tion Inc VicPO Box 89 ‘aesthetic coping mechanism', un- dividuals in a life without hair'. Well done Karena! derestimates the ‘work' involved in This is particularly so around the wearing a wig in terms of managing person's preferences about who different interactions with various should know about the wig and who Tel: (123) 456 7890Mobile: (123) 456 7891 people, and the possibility that there is an appropriate person to be able Fax: (123) 456 7892 may need to be some preparation to make comments about it and how for the person in transition to wear- to manage those preferences.
What are the biggest challenges in the daily lives of women with Alopecia Areata? Thea Chassin is the founder of Bald Girls Do Lunch, the U.S. support As the bulk of women will choose a head covering of some type and most of organisation for women with alopecia. She has recently asked women those will decide they want a wig to be at least part of their appearance man- in her network, what they considered were the biggest challenges in agement, what are the skills that we can learn? their daily lives. In a post in their newsletter Thea has categorised the re-sponses into 4 main categories.
Monique Cormier's article shows some of the ordinary everyday interactionswhich are affected and become part of life with alopecia such as interactions Women with alopecia struggle with positivity and confidence, they worry with colleagues in the workplace and she demonstrates skills that can help about what people think, they consider hair very relevent to their sexuality, someone feel more in control of their alopecia, than vice versa.
and lastly ‘Wig Worry'. This last category fits very well with Karena Moore-Millar's work, Thea also notes that whilst wigs replace what has been lost You can read the complete post by Thea Chassin at: and wigs do give women more confidence in their appearance, it also adds new stresses.
alopecia or just search for Bald Girls Do Lunch.
‘the alopeciologist' May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au

".patient and family centred care is about changingthe culture and about partnering to improve health-care experiences for everyone involved". Terri Beardwood, Dr Cath Crock, Pat Crotty
Photo: Courtesy Skin&Cancer Foundation
Skin and Cancer Foundation
Partnership and collabo Dr Crock's stories showed how important patient and family To sum this up for me PFCC is voices are in modifying services so Dr Crock is alsowell known in her about relationships. that patients, health professionals n Thursday evening March I am going to describe to you an and staff are more satisfied with the role as the creator of 13th, Terri Beardwood and unexpected journey for me over the care that is provided.
I attended this session to past 15 years. Its really a story present a patient's perspective on producer the music about listening and valuing every- Terri told how the imper- alopecia. The evening was intro- one's input - patients, families and sonal nature of her consultation played in many hos- duced by Chris Arnold, the Execu- frontline staff. Its about changing combined with the pain she experi- pitals and health tive Director of the Skin and the culture and about partnering to enced meant she was really unfit to care settings (and Cancer Foundation. The Founda- improve healthcare experiences for drive home, but no one had told her tion through Jane English, is plan- that she would need to bring some- ning a series of 3 sessions this year.
one with her to the appointment.
This as the first in the series and the Much of Dr Crock's work made for the 7.30 audience consisted of about 20 peo- Report and purchase is with childhood cancer and over The discussion was most ple, nursing and administration the course of 3 years of treatment, interesting with 2 dermatologists CDs through iTunes staff and dermatologists.
children undergo many invasive talking about the pressures on them or Readings.
and painful treatments.
in some workplaces which meant This first session was they had less time with their pa- ‘The Magic Island', about "Patient and Family Centred One very important point tients. Terri was able to make a the most recent CD Care" and Dr Cath Crock from the made by Dr Crock was that when number of very positive sugges- is a beautiful collec- Royal Children's Hospital who is she advocted some much needed tions as to how improvements tion of original mu- the Executive Director of the changes which would be less pain- could be made to communication sic by Australian musicians and com- ful for the children and less stress- and record keeping, some of which posers such as Paul ful for their parents, one objection have already been implemented.
speaker. She set out the values frequently put to her was that ‘we Westlake, and Elena which underpin this international have done it in the same way for 20 We can do it!
movement and why it is important.
years and no-one had ever com- There is one thing we can all do, if This is how she commenced the we are given a patient feedback Tasmanian Sympho- form FILL IT IN we can be honest ny Orchestra.
To quote Dr Crock, about both the positive and nega- "Patient centred care what is it? "I want to reinforce that there was tive aspects of our care! If a service There are definitions around which an extraordinary mismatch be- doesn't have patient feedback can give an idea of the basic prin- tween no one ever complaining and forms, write a letter. Like Terri's how they were really feeling". story, your story can make a differ- Respect and dignity ence too. We can certainly do that! A survey of 100 sets of parents confirmed the need for change.
".there was an extraordinary mismatch We thank Jane English,Manager, Clinical Services between no one ever complaining and at the Skin&Cancer Foun- how they were really feeling". dation involving us in thissession.
Pat.
‘the alopeciologist' May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au

"It doesn't matter just what hairstyle you use, as long as it looks right on you just be sure your hair do suits you and is neatly in place.
These grooming habits form the basis of a good appearance" Voice over from " 1940s Fashion - How to Dress and Makeup" on You Tube.
THE PATIENT'S PERSPECTIVE The Option Grid a
continuing with treat- and has recruited a team cisions based on their treatment in recognition story from Alopecia
ments. The Options Grid of professionals to de- preferences and personal of the potentially life is an interesting example velop a one page table of values. It will set out the changing impact of alo- Many people
of how to help people frequently asked ques- options available, their with alopecia face what make those decisions.
tions (FAQs) which will side effects and likeli- Another example where may be difficult deci- help patients discuss hood of success. It will patient views can lead to sions about either start- mas works with Alo- treatment options and include psychological better decisions.
ing or in the longer term, pecia UK as a volunteer make well-informed de- support as a category of We can do this too!
More information on page 8
Our cover
‘We Can Do It!'
Rosie the Riveter
Wikipedia tells Rosie the Riveter song from 1942 on You Tube and see some historic a cultural icon of the U.S. who became a workers of the time symbol of women's ca- pabilities. She was acreation of the artist J.
And the legacy lives on Howard Miller and rep- through a Foundation in resented the American The Foundation runs factory workers during "Rosie's Girls" a nation- the Second World War al youth program for when production needs young women, designed in areas like munitions to build self-esteem, and armaments were leadership and physical very high but the confidence through an number of workers had exploration of trades dwindled with so many and non-traditional ac- men in the armed forces. tivities. Their slogan is,These social circum- stances were also appli-cable to Australia, New "We can do it .today" A group of real Rosies: Factory workers of the time sharing a lunch break Zealand, Canada and theUK.
The poster was designed Lastly but certainly not least, go to You Tube for your guide to keep up morale in the to 1940s femininity, hair, nails and clothes.
1940s Fashion - How to Dress and Makeup You can get a nostalgia fix by listening to the ‘the alopeciologist' May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au
‘the alopeciologist' May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au
From our Facebook page

Sources for this edition
Chassin, Thea In Your Words: The Biggest Chal-lenges Facing Women With Alopecia, Bald GirlsDo Lunch Newsletter accessed April 16th, 2014 Option Grids (USA) and Decision Aids (UK)

OK, So we know we can do it - Shigeki INUI,1 Takenobu INOUE,2 Satoshi ITAMI, But how? What can I do?
Psychosocial impact of wigs or hairpieces on perceivedquality of life level in female patients with alopecia There is an increasing amount of research recog- areata (letter to the editor) The Journal of Dermatology nising the challenges posed in coming to terms with hair- loss - but unfortunately there is virtually no research whichwould help us identify the skills related to hair loss specifi- The Hush Music Foundation cally that we could use and the ways we might learn them.
How do people with alopecia learn the skills they The Australian Institute for Patient and Family develop? How did you learn the strategies you use to live more positively with alopecia? Wiggins, S. Karena Moore-Millar and Avril What would you tell someone with recent hair loss Thomson . "Can you pull it off? Appearance that would help them in their journey? Can you share some modifying behaviors adopted by wig users with of your thoughts with us? Anonymously if you prefer.
alopecia in social interactions" Body Image(2014), there are some great ideas in Monique's article. Have alook and see how many alopeciology skills you can identi- 1940s Hair Styles on You Tube
1940s Fashion - How to Dress and Make- Send us an email [email protected] Drop us a line ‘the alopeciologist',PO Box 89, Camberwell 3124 Victoria, Australia 1940's Fashion - Women's War Hairstyles We hope you enjoyed the Autumn issue of ‘the alopeciologist'. We'd love to hear what you thought of it, because we want to make itboth enjoyable and useful for you.

Source: http://www.alopeciavictoria.org.au/thealopeciologist.1.2014W.pdf