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Cover page: The cover page has been developed from a collection of drawings prepared by participants at the public forum. Participants were asked to describe their personal experiences in a health setting/situation using art.

Interim report: This is an interim report as the recommendations from the report have not yet been made public.

Published by the Ministerial Advisory Council on Disability and the Carers Advisory Council, Western Australia.

May 2013

© Copyright Ministerial Advisory Council on Disability and the Carers Advisory Council, Western Australia, 2013.

This publication is copyright. No part may be reproduced by any process except in accordance with the provisions of the Copyright Act 1968.

Authorised by the Ministerial Advisory Council on Disability and the Carers Advisory Council, Western Australia.

The term ‘the Council/s’ throughout this report refers to the Ministerial Advisory Council on Disability and the Carers Advisory Council (Western Australia).

The term ‘MACD’ throughout this report refers to the Ministerial Advisory Council on Disability (Western Australia).

The term ‘CAC’ throughout this report refers to the Carers Advisory Council (Western Australia).

The term ‘families’ relates to both carers (unpaid) and family members.

Alternative format of this report is available upon request by contacting the MACD or CAC office.

Contact Details:

MACD: Telephone: 9426 9269, Fax: 9226 2316, Freecall for country callers: 1800 629 269, TTY: 9426 9321, e-mail: [email protected] Post: Ministerial Advisory Council on Disability, PO Box 441, West Perth WA 6872.

CAC: Telephone: 6551 8320, Fax: 6551 8556, e-mail: carersac @communities.wa.gov.au Post: Carers Advisory Council, 140 William Street, Perth WA 6000.

mailto:[email protected]


Disclaimer

The information in this report is based on a survey of people with disability, their families and carers, service providers and advocates. The survey was not a randomly-conducted “opinion poll” but rather information from individuals who volunteered to participate.

Surveys based on people who volunteer to participate – and actually make a choice to get involved – cannot be easily generalised to the whole community. At best they should be seen as identifying or being indicative of issues that are held in a given group. They cannot tell us how widely these views are held (for instance x% of people hold this view) and they may leave out whole sections of opinion.

Additionally, while there were a range of different ways people could participate, the fact that the face to face consultation was only held in Perth may have excluded people living in other regions within Western Australia and in particular those who live in remote areas. However the online survey was available to people across Western Australia.

In summary, the following information provides a valuable insight into exploring effective communication practices between people with disability, carers and health professionals within health settings in Western Australia. Conclusions drawn from the information should be used as indicative and not definitive of the extent of feeling about issues and further research would be required to quantify the depth to which these views are present among people with disability, their families and carers, health professionals, other service providers and advocates.

Contents

Acknowledgements 1

Executive Summary 2

Chapter 1: Introduction 7

Chapter 2: Consultation Process 8

Chapter 3: Findings 13

Key Themes 13

Key Findings in Depth 17

Section 1: Information Flow Between People 17

Section 2: Effective Communication 21

Section 3: Sharing Expertise 24

Section 4: Confidentiality and Privacy 27

Chapter 4: Recommendations (not yet released)

Chapter 5: Appendices 30

Appendix 1 Our StoriesAppendix 2 Our DrawingsAppendix 3 Consultation Advertisement Appendix 4 Information PaperAppendix 5 Questionnaire / Online SurveyAppendix 6 Questionnaire Easy English / Compic

Acknowledgements

The Ministerial Advisory Council on Disability (MACD) and the Carers Advisory Council (CAC) would like to express their appreciation to all those who participated and contributed to the consultation by attending the public forum and through submission of written comment and their personal stories.

The Councils would also like to acknowledge the work completed by 32 Degrees South Group in organising the event and the initial analysis and development of the key findings.

Sharing Healthy Conversations Report - MACD/CAC Page 1 of 52

Executive Summary

Introduction

It is important that all voices are heard when planning and organising medical assessment and treatment, so good communication is vital.

The Ministerial Advisory Council on Disability and the Carers Advisory Council partnered to bring together people with disability, carers and health professionals to explore effective communication practices through a public consultation process.

The consultation was aimed at providing people with disability, carers and health professionals, the target audience, the opportunity to provide their experiences and ideas to the relevant Ministers (Minister Robyn McSweeney, with responsibility for Carers, and Disability Services Minister Helen Morton). The intent was to explore effective communication practice for all involved in health settings/situations.

The project was also looking at best practice consultation processes and a variety of methods of providing comment was developed or provided as required to meet the needs of all people including those with communication challenges. These included:

Online survey in Plain English Survey in Easy English Graphic story telling Face to face group consultation Opportunity for individual interview in person or by phone Alternative format survey (Braille) Hearing loop and Auslan interpreters if requested

The consultation was held from August to October in 2012 with a range of methods provided for people to have their say. The information from the consultation was collated and analysed to find common themes which may inform development of policies and procedures and the further education of people with disability, carers and health professionals.

The four key areas of the consultation included:

1. Information Flow Between People2. Effective Communication3. Sharing Expertise4. Confidentiality and Privacy


Post Forum Summary

The following summary was released publicly following the public forum:

Sharing Healthy Conversations lead to strong conclusions

Significant discussions took place at the Sharing Healthy Conversations public consultation forum, concerning the importance of effective communication practices between individuals with a disability, carers and health professionals.

Members of the public who have personal experiences with disability, specialists and council members were invited to share their thoughts on Wednesday 22 August 2012 at the Boulevard Hall in Floreat.

The aim of the partnership between the MACD and the CAC was to hear first-hand about the issues that impact the lives of people with disability, their families and carers.

The Minister for Disability Services and guest speaker Hon Helen Morton MLC commended everyone for a wonderful initiative and said she looked forward to the final report.

She said the people attending the consultation would be contributing to ensuring people with a disability get a fair go like anyone else in Australia.

"People with disability and those with mental illness sometimes experience other issues as well because they are not heard properly by their health professionals. They cannot get their message across or communicate effectively and this is why today is so important in striving for improvement” the Minister said.

Personal stories were shared and opportunities to use art and drawing to express concerns were welcomed in group discussions as facilitators covered four topics including Information Flow Between People, Effective Communication, Sharing Expertise as well as Confidentiality and Privacy.

MACD Chairperson Samantha Jenkinson shared her personal story as a person with a disability and what she has learnt from her experiences with health professionals.

Ms Jenkinson said patients should go prepared with questions to ask their GP or specialists so nothing is left unanswered when leaving an appointment.

If something is complex then it pays to take a person you trust with you, however it is important to realise that any decision is yours in the end. It is also okay to do your own research on your disability, your health or any medical conditions but make sure you confirm your findings with your GP”Ms Jenkinson said.


CAC Deputy Chairperson and guest speaker Kristine McConnell has extensive experience in community services throughout Western Australia specialising in mental health as well as Culturally and Linguistically Diverse communities. She has also been a carer of family members for over 14 years.

Ms McConnell said it is important that each person knows what his or her rights are.

“My very first GP said that I am the expert when it comes to my health and body. I know what I am feeling and therefore a doctor cannot help me unless I communicate” she said.

Sharing Healthy Conversations demonstrated how important it is that all voices are heard when planning and organising medical assessments and treatments.

Intensive Care Specialist at Royal Perth Hospital and past president of the Australian Medical Association Western Australia, Dr Simon Towler, said his role was somewhat different to that of the carers and people with a disability.

“I am involved in stories where people are fine one day and the next they’ve got a lifelong disability. It is fascinating to see how people cope with these situations, how they develop around those with disability and how the community can help”, Dr Towler said.

He said the system needed to change to be able to adapt to the needs of the patient first, rather than the needs of the provider.

“I think you are all amazingly important and courageous for being a part of this consultation. The information and thoughts that you share today are so important”.

The results from Sharing Healthy Conversations will be collated and analysed to find common themes, which will inform future policies, procedures and education initiatives.


Key Themes

Summary of the key themes developed from the consultation findings:

1. Information Flow between People

Information should be provided in a simple but well explained format, including alternative methods for those who have difficulty in understanding.

Access to information: Information on available resources should be provided and distributed in a user friendly way.

Preparation before appointments is required to allow more in-depth medical consultations to occur.

Transferring of information as people move through different service providers in their health care journey is important, to reduce people having to continually ‘retell their story’.

2. Effective Communication

Effective communication involves speaking and listening from all parties and includes body language and clear language.

Training of general staff on ways to appropriately engage with patients with disability and their carers.

Building relationships: Better communication practice to achieve long term relationships and trust.

3. Sharing Expertise

Expertise of all parties: Acknowledging the expertise of all involved.

Communication practices: Developing effective communication practices and eHealth strategies to reduce the time individuals and carers are required to repeat their story.

Choice: Provide choice, including an individual’s right to question and to request other opinions and/or options.

Learning for health professionals is needed to increase their knowledge and expertise for better communication and an improved understanding of their obligations.

Learning for individuals and carers is needed to increase their skills to better self-advocate and to understand more about the supports and services that are available.

4. Confidentiality and privacy

Differing views on a clear definition between privacy and confidentiality.

Privacy: Maintaining a balance between an individual’s right to privacy and the sharing of information relating to their health care.


Confidentiality: Processes to ensure the sharing of an individual’s confidential medical information is in their best interest.

Legislation and Policy: Set guidelines to be developed for situations where an individual’s rights have been breached.

Guardianship / Decision Making: Guardianship issues versus individual rights to privacy and a person’s decision making capacity.


Chapter 1: Introduction

About the Project

The initial goal of the project was to demonstrate best practice inclusive communication/consultation processes when consulting and engaging with individuals with disability and their carers. Health was determined as the focus topic of the consultation due to both Councils’ common interest in the area.

The MACD and the CAC developed a partnership to bring together people with disability, carers and health professionals to explore what enables effective communication practice between individuals with disability, carers and health professionals in health settings/situations. The then Minister Robyn McSweeney, with responsibility for Carers, and the Disability Services Minister Helen Morton were keen for their advisory councils to undertake this work through a community consultation process.

As the project was also looking at best practice consultation processes a variety of methods of providing comment were developed to meet the needs of all people, in particular those with communication challenges.

The information from the consultation was collated and analysed to find common themes that could be used to inform development of policies and procedures and the further education of people with disability, carers and health professionals. The consultation’s key findings are detailed in Section 2 of this report.

About the Councils

Ministerial Advisory Council on Disability (MACD): The role of the MACD is to advise the Minister for Disability Services on issues that impact on the lives of people with disability, their families and carers. MACD is an independent consumer based body and exists to ensure these issues are adequately represented to Government. Membership consists of up to 14 people who are people with disability, carers, family members, service providers and advocates. For further information, visit www.macd.wa.gov.au.

Carers Advisory Council (CAC): The CAC advises the Minister with responsibility for the Carers Recognition Act 2004 on relevant issues for carers and provides an annual report on the compliance of reporting organisations with the Act. The CAC consists of up to ten people who are carers or people who know about supporting carers. All bring a range of knowledge and experience of the caring role. For more information, visit www.communities.wa.gov.au/serviceareas/carers/Pages/CarersAdvisoryCouncil.aspx


http://www.communities.wa.gov.au/serviceareas/carers/Pages/CarersAdvisoryCouncil.aspx



http://www.macd.wa.gov.au/about_us.html

Chapter 2: Consultation Process

How the consultation was conductedIn line with best practice consultation principles, a number of methods were developed to ensure all people were able to fully participate in the process. They included:

Verbal public forum – group discussion one-on-one interviews telephone interviews.

Written online survey questionnaire via email, post and fax submission of comment using free-form via email, post and fax easy English / Compic Braille format was provided upon request.

Essentially the Councils were open to whatever method people wanted to use to have input.

Access requirements for forum attendees and respondents Accessible venues and written information. Specific support for people with disability and carers. Auslan interpreters. Brailled copies of handouts/questionnaires were available upon request. An online survey and an MS Word version were available for everyone to

complete, particularly for people from rural and regional areas and those who were unable to attend the forum.

Public ForumThe public forum was held on Wednesday 22 August 2012 at The Boulevard Centre in Floreat - an excellent accessible venue.

An abridged version of the questionnaire/survey was developed to guide discussion at the public forum and to align the information gathered across the consultation mediums. The group conversation enabled deeper discussion on topics. The format also included opportunities to use art and stories to communicate. Some of the artwork has been used for the cover of this report.

Both MACD and CAC members were directly involved in facilitating the roundtable discussion at the forums.

The Disability Services Minister officially opened the public forum. Other presenters included the MACD Chair, the Carers Advisory Council Deputy Chair and Dr Simon Towler.


Who Participated

ForumThirty three people attended the public forum held in August 2012. The forum was attended by an equal mix of the three key groups the consultation was targeted towards - individuals with disability, carers and health professionals / service providers, providing a balanced range of perspectives.

Perspective No. of attendeesPerson with a disability 10Carer 10Health professional/Service Provider 13

SurveysA total of fifteen people participated in the online survey. Some people represented more than one perspective, therefore the number breakdown below does not equate to the total who participated. However the data does provide an insight into the groups of people who were represented at the forum.

Perspective No. of attendees %Person with a disability 6 40Carer 4 27Family member 3 20Health professional 7 47Service Provider 2 13Advocate 3 20

Types of disabilityParticipants were asked to identify their disability or the disability of the person they care for. These are listed below:

Intellectually disability Physical disability Vision impairment and blindness Deaf and hard of hearing Downs syndrome Acquired Brain Injury Autism Spectrum Disorder Developmental delay Cerebral Palsy Physical - amputee Quadriplegia William's Syndrome Parkinson’s Disease Arthritis Mental health


Evaluation of the consultation process

Overview

A key goal of the project was to examine best practice consultation processes. This was conducted through evaluation of the feedback forms that were completed by participants who attended the public forum.

Several people welcomed the opportunity to share ideas and opinions and learn from others. Many of the participants said they enjoyed the day and what they liked most was the opportunity to openly voice their opinion and be able to relay their personal story in a comfortable and open environment. They also appreci-ated how everyone listened and valued each other’s contribution. Due to the broad composition of participants many felt that they would leave the forum with an increased knowledge and understanding of other perspectives. It was also mentioned that the public forum was a great opportunity to meet people with a like interest and to network with other people who are interested in improving disability services.

When asked about the format of the forum, most of the attendees liked the ice-breaker where they were asked to ‘buddy-up’ using a story-based sharing process either using illustration or simply writing their story. Approximately a third of the group preferred the illustration model to describe their experiences while a lesser number of attendees preferred to write their story. Both groups were encouraged to provide more in depth comment using the online survey.

When participants were asked about whether there were other ways they would have liked to have shared their story and information, they suggested the use of video and the internet.

Participants suggested that the world café method may not have been the most beneficial way of conducting discussion. The practice of rotating groups was considered a very time consuming exercise. Their preference would have been to stay in the one group as moving tables, introductions and working with a new facilitator was considered a waste of valuable time. This format also presented difficulty for some people due to their disability. Although many people consid-ered the World Café a difficult process, some people liked the process of the fa-cilitators rotating through the tables rather than the participants having to move – the usual process for World Café. Some of the facilitators said that by meeting a cross section of the group it exposed them to a range of perspectives.

A majority of people stated that more time was required to respond to ques-tions. Some people had difficulty with the language used in the questions and felt that they needed more explanation. The limited time and language also made it difficult for those people with comprehension or communication issues to participate fully.

Participants noted that seeing the questions in advance would have enabled better participation in the event. Although the forum questions were an abridged version of the online survey, forum participants may not have been aware of


this. For future consultations this could be included in the forum flyer for people to better prepare for discussion.

Some attendees cited the differing skills of the table facilitators and scribes as a factor. Some were better able to facilitate and control discussion and to capture discussion points more accurately. More extensive training for facilitators and scribes could be undertaken for future events.

One person raised the lack of alternative formats available i.e. braille copy. An-other person stated that, receiving the printed information in advance so they could enlarge it before attending the session, made it accessible and easier for them to participate. Requests for alternative formats and access requirements were published in all advertising material. Provision of these supports is a cus-tomary practice for all community events conducted by both Councils.

Participants felt that mental health was not adequately covered and there was a general lean to only physical health.

Many considered the venue setup enabled good interaction as well as excellent accessibility. However a small number stated that being located in Floreat may not have attracted a range of people, particularly from different ethnic/socio eco-nomic groups.

In summary most of the participants left the forum feeling that they were able to provide their opinion and comment on the subject area.

Key points Group/table discussion provided a comfortable and open environment and

improved knowledge and understanding of other perspectives. Forum created a great opportunity to network with others. The method provided several ways for people to participate; through a story-

based sharing process using illustration or a written version of their story. The World Café’ process may not have been the most beneficial way of

conducting the forum; it was considered by some to be time consuming and difficult for some attendees with a disability.

Limited time and the language of the questions made it difficult for some people with comprehension or communication issues.

Knowing the questions prior to the forum may have allowed participants to consider their responses prior to attending and may have led to better dis-cussion.

Variance in skills of the table facilitators and scribes. Location of venue can sometimes limit attendance from some ethnic/socio-

economic groups.


Suggestions for improving the consultation process

Key suggestions

Use video recordings and the internet to share personal stories and informa-tion.

Provide alternative and innovative methods for people to participate in consultation processes. For example illustration and one on one story-based sharing.

When planning public consultation forums consider the needs of your audience, including the time scheduled/allowed, accessibility of the environment and information.

Forum flyer to include the outline of discussion (questions) to allow people to pre-prepare.

Undertake training for facilitators and scribes prior to event.

Ensure location of venue does not limit ethnic/socio-economic groups from attending.


Chapter 3: Findings

Key Themes

Below is a list of the key themes identified from the key findings.

1. Information Flow between People

How Information should be provided Information should be provided in a simple but well explained format,

particularly at first stage of diagnosis when a lot of information is provided. Alternative methods for communicating information such as through signs, pictures, words, computers, for those who have difficulty in understanding is also very important.

People with disability and their carers can face information overload at the stage of first diagnosis. Two-way conversations (or three-way if there is a carer involved) can assist with this process in addition to writing information down.

Access to Information It is important to inform and update people with disability and their carers on

available resources including financial assistance packages and personal assistance as well as support and community networks.

To inform people of the services available, various methods need to be used and include user friendly brochures, posters, fact sheets and appropriate face to face interaction.

Preparation before appointments Individuals with disability and their carers benefit more from consultations

with health practitioners when they research and prepare questions prior to the consult.

Individuals should also, if able, take notes during the consultation and ask for a written record.

Due to the limited time available during consultations, health professionals should spend time talking with the client as opposed to going over basic health information.

It is important to be clear on what all parties are expecting to achieve as the outcome for the person with disability.

Transferring of Information As people move through different service providers in their health care

journey it is important to find ways for information to be passed on efficiently such as through standardised forms across health care provider and the new eHealth records system.


Continuity of information and standardisation of records and forms across service providers is required so that people do not continually need to ‘retell their story’.

2. Effective Communication Effective conversation involves a two-way honest conversation, or a three-

way conversation if a carer is involved, involving speaking and listening from all parties.

Appropriate body language such as maintaining eye contact and paraphrasing must be used.

Clear language and effective communication involves all stakeholders clarifying their expectations, agreeing to outcomes and acknowledging concerns and feelings discussed during the consultation.

Effective communication is paramount in avoiding ‘information overload’ at the first stage of diagnosis due to the amount of information provided.

Training of General Staff Training for health professionals on effective communication practice when

relating to patients with disability and their carers.

Professional development training should include hearing the lived experience of people with disability and carers.

Participants indicated that there may be value in compiling and disseminating a database of General Practitioners with expertise in disability.

Building Relationships Many respondents felt that better communication occurred when long term

relationships were established between the health professional, person with a disability and the carer.


Expertise of all parties All those involved have a role to play.

Acknowledging the shared expertise and experiences of all involved, particularly the expertise of individuals on their own health care requirements.

Recognition of the expertise of the carer in a respectful and inclusive manner. In circumstances where the individual cannot speak for themselves, the carer may be able to provide the appropriate information.

The need for specific expertise to ensure a holistic and integrated health care is provided to an individual.


Communication practices Develop more effective communication practices through the use of effective

language in a clear and concise manner.

eHealth strategies provide better communication between health professionals to reduce the time individuals and carers are required to repeat their story. This would allow more quality time at medical appointments and enable more focus on treatment.

Choice Provide choice, including an individual’s right to question and to request

other opinions and/or options.

Learning for health professionals Training for health professionals on how to support individuals and carers.

Increase the knowledge of health professionals obligations outlined in legislation i.e. the Disability Services Act 1993 and the Carers Recognition Act 2004.

Health professionals must be able to:o accurately assess a client o have the skills to advise on the appropriate interventions to meet the

client’s health care requirementso have a broad understanding of what services and support are available in

the communityo understand how the health issues impact on a person’s life rather than

just the impairment level.

Strategies for retention of health care staff i.e. an ageing workforce as experience goes with them.

Learning for individuals and carers Increase the self-advocacy and learning skills of individuals and carers.

Ensure sufficient information is provided to individuals and carers about supports and services, funding sources and pathways to access these.

4. Confidentiality and Privacy

Key theme Differing views and confusion on a clear definition between privacy and

confidentiality.

Privacy Maintaining an individual’s privacy can protect their dignity and establish

trust.

Personal stories told in confidence with the professional that are not relevant to the care should remain private.


The balance between rights to privacy and whether passing on the confidential information is in the best interest of the individual and their health care.

Confidentiality Confidential medical information to be kept secure with access only by other

health professionals or others (i.e. carer) on a need to know basis.

Confidentiality between the health care professional and the carer needs to be established and the importance of identifying in advance what information can be shared.

Overruling of privacy and confidentiality in situations where the individual’s health is at risk, there is a risk of self-harm or there is serious, imminent danger to others.

Implications of sharing information as opposed to withholding information.

Legislation and Policy Suggestions were made that a privacy framework should be developed to

determine who has access to private and confidential information particularly so for medical information and eHealth records. There is currently no Privacy Act in Western Australia but the Commonwealth Privacy Act 1988 prevails.

There was a perceived need for set guidelines to be developed for situations where an individual’s rights have been breached.

Guardianship / Decision Making Guardianship issues versus individual rights to privacy.

Individual’s decision making skills may need to be examined before making a decision to take over his or her rights.

If a person has a decision making disability or is unable to effectively convey their wishes, then information should be given to the carer or a family member to assist in choice around the best treatment.

Where there is no formal guardianship in place, it was suggested that a clear governance structure needs to be put in place identifying those individuals who have the capacity to make decisions on behalf of the individual.

Difficulties experienced in determining what information is relayed to parents of adult children.

Processes relating to permission for carers to access, and be involved in discussion, regarding an individual’s confidential information.


Key Findings in Depth

The comments below are the key findings resulting from the consultation and reflect the opinion and knowledge of participants.

Section 1: Information Flow Between People

Who gave you the information?

A number of stakeholders were identified as being the key sources of information for the individual including general practitioners, emergency department doctors, nurses, social workers, therapists, carers, family members and the community.

There was a general consensus from the participants at the forum and respondents to the questionnaire that when they were first informed about their disability they were unable to process all of the information due to the impact of the news. With this in mind, it is important for health professionals to be equipped with the skills to identify the personal factors that are specific to a client’s situation. It was thought that it would be beneficial for the health professional to review each client, with acknowledgement of differing age groups and cultures and find the optimum way to communicate. Many of the participants encouraged the health professional to be responsive and to establish a relationship with the individual.

“It is important to see the whole person not just the health issue”

The feedback from many respondents was that individuals with a disability and their carers rely on health professionals to provide them with clear and accessible information that enables them to understand their condition and to help them manage the many challenges of living with their disability.

In this respect, it is important to have an interactive conversation with all involved, which includes the health professional, the individual and a carer if present. Individuals and carers need to receive timely, relevant and accurate information and be fully briefed on the various options and sources of information and support services that are available to them.

“We cannot access what we do not know about!“

“People want access to information, to be able to understand and to have clarification and openness”

It was also noted that it is equally important for individuals and carers to use this information proactively.

“We are fantastic at creating information. We actually have to get people to look at it and to use it”


Whilst the carer is not often looked upon as an expert on disability, generally carers provide the bulk of information and provide the support to the person they care for. In this respect, it is important for health professionals to ask carers questions and to listen to their responses so that they may better understand their client’s requirements. It’s important that all stakeholders are able to see the big picture and that the information is consistent and not conflicting.

“I find if both carer and care recipient are given a chance to interact with the health professional a clearer and broader

picture is provided”

There was also feedback that there needs to be continuity of information as people are moving through different health providers. It was suggested that procedures be put in place to capture information across service providers so that people do not have to retell their story time and time again. Many participants recommended that the client’s file should be passed onto each health professional as time is wasted gathering patient history and replicating information.

Staff turnover amongst health professionals was raised as an issue as it can affect the continuity of a person’s care as the new health professional once again has to gather the information and become familiar with the client’s history.

It was thought that electronic information is a very good tool and provides a template for the individual and their carer that they can keep and take with them to all appointments.

There was a questioning of the methods we are using to provide the information. Better understanding of assistive communication devices is required.

“There is a need for integrated informational across services to stop people having to retell their story”

There was also feedback that technology and the internet provides new opportunities for access of information and innovation in capturing and passing on medical histories. Feedback indicated that greater investment for secure information technology systems is needed for people to be able to readily access their personal health information at any time of the day, such as password protected client portals.

Responses to how information is provided to people

Many examples were given on how information can be provided through brochures, pamphlets, verbal information, face to face interaction and written form. Posters and fact sheets displayed in waiting rooms was seen as being a beneficial way to inform people of the services that are available to them.

A number of participants commented on the complex information passed on during consultations and that there is a risk of information overload for the


individual and he/she may not remember all the details. To counteract this, it was recommended that information be presented in a simple but well-informed format and with a clear, written backup to refer to afterwards. This written record could also become part of the client’s primary record.

Participants said that health professionals should be encouraged to use services such as eHealth to better communicate with those who are non-verbal. It was also suggested that a Medicare subsidy for telephone and email for medical consultations for people with disability could be extremely useful and minimise some of the access barriers.

Many respondents stated that it is also important that clients and carers to maintain their own written summary of events.

It was seen as beneficial for specialists to move forwards electronically, to maintain detailed eHealth records and to establish an email relationship with their clients. Electronic information was viewed as a proactive way of creating a record, as information can get lost between organisations. This information could be stored centrally for efficient and accurate sharing of information.

“A process should be put in place to provide consistency between hospital information and to share the expertise across health care

providers in order to establish a well-managed long-term care team with full understanding and history of condition”

It was frequently mentioned that there should be continuity of information and standardization of records and forms across service providers so that people do not continually need to retell their story.

“There is a massive discrepancy on what health forms look like in different health places, we need standardization of forms”

“Need all information stored so each health professional can have access to it - to stop people having to retell their story”

Importance of clear and concise information

The recurring theme of information overload was raised again and it was noted that the individual with the disability, their family or carer often do not understand the medical terminology/jargon.

It was reiterated that information should be simply explained and well presented. Once again, participants requested that the health care provider use language that is understandable to the client and it was suggested that they could use simple diagrams to assist the individual with understanding.

“First time you hear it you may not get all of the information,this is the time to ask questions – limited jargon and no acronyms”

Respondent’s stressed that it is important for the patient and carer to ensure that they are fully prepared prior to their appointment because of the difficulty in


getting appointments and limited time-frames of the appointment itself. It was encouraged for patients and carers to be provided with guidance as to what to expect and how to prepare.

“Have an outline of why you are going, be prepared, do your homework”

Who should be involved in the decisions made about treatment and future planning?

Feedback from participants was that decision-making about treatment and future planning for the individual should be inclusive of close support networks, with recognition of the people around who care about the person. With this in mind, it is beneficial to ensure that all stakeholders are involved wherever possible.

A key point was raised that it is important to recognise that the person with the disability is at many times able to make decisions independently and that the health professional should talk to the client first before consulting others.

“Sometimes assumptions can be made and the person with the disability may feel that that they are the last person to be

given a voice and this should be avoided”

Many respondents articulated the need for a legal framework and governance structure to be put in place, clearly identifying the person who has the capacity to make the decision on the individual’s behalf, and ensuring that all roles are clearly defined.

“It is important to identify who is the correct person who will make decisions and to document this”

The importance of understanding the rights of the individual was also raised as key to making appropriate choices in going forwards. In a case where the primary care giver or parent is the decision maker, there should be informed consent that allows decisions to be broken up into multiple decision-making areas.

“There needs to be the capacity in the health system to identify who is involved in the person’s care”

“Where there are children involved, power and control needs to be shared and health issues should be discussed with both the

child and carer/guardian”

Participants discussed a scenario where the individual is living with a mental health or brain injury and may not be able to understand many of the questions aimed at him or her, or for that matter to process the range of options that are available. In this instance it is important for the carer/next of kin to be identified and for clear decision making protocols to be put in place.


There was identification of the lack of speciality services across the healthcare system. General practitioners were identified as the key stakeholders advising people with disability, but it was noted that they are coming from a generalist training background and perspective. In this respect, they may not be the best person to advise the person living with a brain injury, for example.

Many participants endorsed establishing a relationship with a GP over a period of time, as they felt that it is often difficult to stop or to query a specialist.

General feedback was that whilst a GP may not have the expertise on a range of disabilities, he or she could often be more tolerant to the individual’s requirements. Many respondents pointed out that it is through regular visits to the GP that a level of continuity of care can be provided. This in turn enables the GP to become familiar with the client’s health condition, establishing ongoing care requirements and positive outcomes.

“The local GP does not have expertise in disabilities. They are generalists”

It was advised that training be provided to the general medical profession on how to engage with patients with disability. It was suggested that the training would be more beneficial if people with disability and carers were involved in the process.

It was also seen as beneficial for individuals and carers to be provided with a list of GP’s who have expertise with certain disabilities. It was requested for this information to be communicated through different information channels.

Section 2: Effective Communication

What people think effective communication is when receiving and providing health and medical services

Firstly it was seen as important for the health professional to identify whom to talk to. The health professional should acknowledge when the individual with a disability is able to take responsibility for his/her own healthcare and to ensure that he/she is comfortable to ask questions as well as respond to questions.

Being viewed as an individual with specific needs was viewed as an important factor in establishing effective communication between the health professional, individual and/or carer. It was encouraged for rapport to be established between the individual and the health professional with listening and effective communication on both sides.

“Being validated about your concerns”

“Being seen as a person with individual needs”

Many respondents felt that better communication was established when long term relationships were established between the health professional, client and carer.


It was encouraged for the health professional to utilize the appropriate use of eye contact and body language in order to provide a safe and confident environment. It is important for the health professional to set the tone, to build trust, and to provide timely, relevant, accurate and appropriate information.

“Trust and respect needs to be established and maintained between the ‘communicators’ and the individual and their

carer should feel free to ask questions”

“Mutual respect makes things run smoother, being on the same page achieves a better outcome”

It was advised that the health professional should listen to the patient and carer, to be sensitive to their feedback and to avoid making assumptions. The health professional should ask for input and opinions from the client and carer, and to acknowledge that what they are saying is important.

“Effective communication means, I feel calmer – heard, it is important to adapt communication to a person’s ability”

Respondents stated that there should be a clarification of expectations, an agreement of outcomes and an acknowledgment of their concerns and feelings discussed during a consultation. Clear language and effective communication is when all parties take the time to really listen to each other. It is important to feel comfortable in asking questions and to clarify the situation if there is any doubt.

It is also important for the health professional to understand that during certain situations the client may not be able to take in all of the information. In these instances it is important to check that what has been communicated has been understood. It is often helpful if the health professional repeats back information to the client to ensure he or she has understood the information correctly (and vice versa). As in previous questions, it was recommended that health professionals avoid medical jargon and utilize mechanisms to reach the same level of understanding.

“The doctor should communicate in a way that the patient finds is easy to understand, keep it simple and avoid medical jargon.

Verbal information should be backed up by written notes”

“Simple language is much more effective that meets both parties needs and there should be an understanding of what has been said

when the patient walks out the door”

What is needed to support effective communication between all key people?

Many stakeholders felt that it is important to ensure that the health professional has a fundamental understanding of what effective communication is and that the dialogue is tailored to the needs of the individual. It was considered that training for health professionals on how to communicate with people with disability would be beneficial. This would better equip health professionals with


the skills to help them understand what carers and care recipients are saying. In general, it was thought that communication skills training would enable health professionals to more fully understand an individual’s wishes, choices and needs for support.

Participants highlighted the importance of maintaining a level of mutual respect in the relationship between the health professional and the client. A number of respondents recognised that there should be a willingness from both parties to listen, and that ‘listening’ was complimented by a flexible approach and a striving for mutual understanding.

“It is important for staff to be trained to listen, but it is important for there to be listening on both sides”

“Provide a safe environment and knowledge around effective listening/effective communication skills”

“An open, honest relationship promotes a better outcome”

A common theme was that there should always be a team approach in the health professional/client relationship, with a desire to build two-way trust and respect. It was also deemed important to develop a clear understanding of what both parties are trying to achieve - with the end result being a positive outcome for the individual being treated.

“A clear understanding of what both parties are expecting to achieve as the outcome for the individual being treated. Sometimes expectations don’t match,

so discuss and move forward to something close”

Once again it was recommended that health professionals provide information and options in a language and format that is easy to understand and to access. As in previous questions, participants requested that health professionals write down instructions clearly, and that they check with the individual and/or carer that he or she understands what is written down. If the information is not understood then it is recommended that then the client (s) may require an alternative format. It was also recognised that all individuals should have access to a functional way of communicating their own ideas (i.e. through signs, pictures, words, computers etc.) and for the health professional to have the skills and experience to communicate using these mediums.

Many respondents felt that time restraints in appointment times and cost can be a barrier to establishing a good relationship with a GP. Requests were made in the survey for GPs to organise longer appointments and to allow flexibility and time to build a relationship with their client. Once again it was encouraged to plan prior to visiting health care professionals for best utilisation of the time available.

“People with a disability sometimes need close contact but not frequent physical examination, and the barriers to personal

attendance at a doctor’s surgery can be high”


A key point was raised that social investment in care is not just medical, there needs to be community involvement and public awareness campaigns to increase knowledge and understanding about disability. The public also needs to be aware of what information they can request and this information should be user friendly.

Section 3: Sharing Expertise

Participant’s understanding of expertise in a health setting

It was commonly agreed that all stakeholders have a role to play and that it is important to acknowledge the shared expertise and experiences of the people around the table. Communication should be shared and discussed with a holistic and integrated course of treatment being agreed upon by all parties. For many people, this approach provides a variety of choices, as well as acknowledging the individual’s right to question and to request other opinions or options.

“Each of us brings particular knowledge, skills and expertise to the equation and that should be acknowledged when information

is being gathered about a person and decisions made”

It was understood that in some instances people may have varying perspectives and priorities but that all stakeholders can contribute to a core holistic understanding of an individual’s health concerns, wellbeing and future outcomes.

Many participants stressed the importance of understanding how someone’s life is impacted by disability and how an individual’s family and carer expectations remain extremely important and relevant.

“Ultimately, understanding health issues at an impairment level is not as important as knowing how someone’s life is impacted”

Across the group there was an acknowledgement that “experts” are qualified and knowledgeable in their fields of expertise, whilst at the same time recognising a requirement for better communication, using effective language in a clear and concise manner. It was identified that the individual concerned also has expertise and a clear understanding of his/her own health care requirements. With this in mind, and as in previous questions, the importance of a team approach was again reiterated in chronic care models, and it was reaffirmed that the individual needs to be able to trust the heath provider or professional.

“Respect what the person is saying about their health as they have firsthand experience of what is going on”

It was seen as important to recognise the expertise of the carer in a respectful and inclusive manner and to include the carer in the dialogue regarding the individual he/she cares for. In circumstances where the individual cannot speak


for himself or herself, the carer was identified as being in the best position to step in and advise how to get the best results.

Feedback was that the client should always be treated as an individual, but with recognition of the shared experience and understanding between patient and carer. A carer’s role was seen often to stand back whilst at the same time acting as an advocate for the person with the disability. It was also raised that some carers have their own health issues that they may also be dealing with.

The general feedback was that the standard of Western Australian health professionals is very good but that it is also possible to get a variety of experience depending upon whom you meet. A need was identified in this state for suitably qualified professionals delivering timely and effective treatment. A health professional must have enough experience to accurately assess a client and to have the skills to advise on interventions that will meet the client’s health care requirements. This involves the health professional having a broad understanding of what services and support is available in the community, and in turn providing the client with the resources to point the client in the right direction to receive the support to meet his/her needs.

Retention of health care staff was raised as a problem and an ageing workforce because experience goes with them.

What can be done to support individuals/carers to provide their expertise in the health setting?

Feedback from participants was that mainstream medicine is not always adapted to the special needs/conditions of individuals living with a disability, and it requires specific expertise to ensure that holistic health care is provided to the individual.

With the provision of suitably qualified health professionals there is also a requirement to further develop their expertise and experience for the best outcomes. It was suggested that training could also be provided for health professionals in how to support individuals and carers. Many saw it as a two-way process of briefing the medical profession but at the same time encouraging health professionals to be innovative and to introduce new ways.

Health professionals need to understand that the individual and their carer are “experts in their situation”. The perceived role of the health professional is to listen to the individual and/or carer, support them through medication, to offer referrals and to help them attain the best quality of life and health outcomes.

“Trust the judgment of the individual in their choices. Just because something might be the “right” product or method, doesn’t

mean it is practical for their lifestyle”

It was suggested that health professionals would benefit by being briefed fully on the Carers Recognition Act 2004, which acknowledges the exceptional contribution of unpaid carers. Many participants commented on the best practices for health professionals to understand their obligations under the


‘Carers Charter’ and the practice of sound questioning strategies to ensure all parties have sufficient opportunity to put forward information for consideration.

It was recommended that patients and carers be educated in self-advocacy and learning skills to enable them to address many issues themselves.

Agencies are providing more advocacy and awareness on disability issues, including the challenges for carers and individuals. It was believed that with more training, health professionals would be able to provide greater advocacy to individuals with disability and carers on the supports and services available.

Many participants identified the need to ensure that sufficient information is provided to clients and carers about services available, funding sources and pathways to access these.

“Support groups are really valuable, as peer support is helpful to talk about things that are important”

Workshops, information brochures and DVDs are extremely helpful for providing information to individuals and carers.

“Good community based care would stop a lot of more serious health issues”

The challenges and opportunities that exist for health professionals in relation to listening to individuals/or carers

Feedback from participants was that there is an opportunity throughout the state to provide better education to health professionals in treating a person with a disability and in building effective communication.

The eHealth strategies are viewed as an opportunity to provide better communication between health professionals to stop having to retell your story, which is a significant theme across all feedback.

Many viewed it as positive that electronic data and information could be updated online as it saves time.

Many thought that health professionals should find ways for appointments to be spent on time talking with the client as opposed to going over basic health information. The limited time for appointments plays a big factor as decisions are often made quickly about serious issues. It was requested for quality time with the GP or specialist and for flexibility with appointment times.

Section 4: Confidentiality and Privacy

Participant’s views on the difference between confidentiality and privacy

Respondents did not present a clear definition between privacy and confidentiality. Generally though participants considered the term privacy referred to an individual’s private information and confidentiality related to the


process of sharing information between health professionals and the individual and/or carer only and not to be passed on without consent unless related to treatment.

Many of the respondents felt that maintaining the privacy of an individual’s information went a long way in protecting the dignity of the individual and worked towards establishing a collective level of trust. General feedback was that all confidential information whether sensitive or not and obtained for a professional health purpose is to be kept secure with access only by other health professionals or others (i.e. carer) with a genuine need to know. Many thought that a balance is required between rights to privacy and ‘need to know’ information. It was also identified that there are often conflicting and/or competing opinions on who gets to decide whether passing on the confidential information is in the best interests of the individual concerned.

“Privacy is the person’s right not to have a health professional divulge particular information to others as dignity may be compromised”

“To maintain a person’s privacy is to preserve their right to choose, not to have to share non-crucial personal information with others if so requested”.

“People value health and will trade off a level of privacy for best care but want to know what information will be shared and who will it be shared with?”

It was noted that whilst individuals with a disability should also have access to privacy in their day-to-day life, sometimes their physical environment does not make this possible.

Additional feedback was that confidentiality between the health care professional and the carer needs to be established and that it is important to identify in advance what information can be shared.

It was agreed that carers should be trusted but that they do require permission from the person with the disability for access to confidential information.

“There should be a question at the beginning, are you willing for your carer to hear things about you?”

“The individual has the right to set the boundaries and to provide informed consent for the sharing of information”

Views on what information should remain confidential

It was agreed that health professionals require particular information to ensure that the most appropriate care is given to an individual.

Information shared in confidence must be kept private, particularly so when personal stories are shared in confidence with the professional but may not be relevant to the care. It was strongly noted that all medical information on an individual should remain confidential and only shared on a need to know basis.


“There is currently no privacy act in WA, Commonwealth only, therefore a process needs to be in place how privacy is handled”

Respondents recommended that a framework be in put in place determining who has access to private and confidential information for medical records, particularly so for eHealth.

“Communication between clients with doctors via electronic media – who should decide what form of communication is acceptable?”

Opinions on where a person’s privacy can be overridden

There was the common view that there is due reason to overrule confidentiality in situations where the individual’s health is at risk, or there is a risk of self-harm. This is also the case where there is serious, imminent danger to an individual or to others, and if by not disclosing information it would cause harm to the individual or to a member of the community.

A number of respondents added that privacy may in some instances be overridden if the client’s health is put at risk.

“Confidential information can be shared if there are life-threatening factors to the patient or another person. If the information needs to be shared (legal

matter or endangerment) then the client needs to be aware that you have to share this information”

Questions were raised on the implications of sharing information as opposed to withholding information. Participants also questioned whether it is acceptable for a health professional to breach a client’s rights, and suggested that there is a need for set guidelines to be developed. Guardianship issues versus individual rights to privacy were also raised.

“Where is the line or direction on where we can relay information to parents?”

The decision to break confidentiality was seen as a discretionary matter that could vary on a case-by-case basis. In instances where there is an intellectual disability, it was recommended that an individual’s decision making skills may need to be examined before making a decision to taking over his or her rights.

“There needs to be a questioning over capacity – whether you need to investigate further”

In some instances where a patient needs an operation and won’t agree to it (even if it is life-saving) a level of care is required as to whether the decision can be over-ridden. It was also noted that a person’s privacy can be over-ridden with permission from the person involved, or in some instances their family of carer.

It was advised that if a person has a decision making disability or is unable to (temporarily or permanently) effectively convey his/her wishes, then information


should be given to the carer or a family member who will be able to understand the choices and best treatment to be progressed.


Chapter 5: Appendices

Appendix 1 Our Stories

Appendix 2 Our Drawings

Appendix 3 Consultation Advertisement

Appendix 4 Information Paper

Appendix 5 Questionnaire / Online Survey

Appendix 6 Questionnaire Easy English / Compic


Our Stories Appendix 1

Story 1 – My brother

My brother had been back and forwards to hospital for a range of medical tests. The level of support was very questionable. My brother has worked at the hospital for 16 years and he was treated at the pathology reception very rudely by a lady that had no time at all for someone with a disability. Luckily my brother has me to handle very tricky situations like this. I sympathise for people that don’t have anyone to stand up for them and wonder how they would manage the health system alone.

Story 2 – My son

I am the mother of two adult sons with different levels of intellectual disability. My story is mostly about my younger son who is quite severely disabled, non-verbal and has epilepsy. He is also hyperactive.

I discovered that diet made a great difference to his level of hyperactivity. This was widely disbelieved and when he had short stays at hostels for my respite, the various people kept him on the diet to humour me.

When he was 12 it was decided to commence him on medication. He was taken off the diet to determine the baseline of his behaviour. The removal of the diet lasted for one meal only. I was given credit for knowing what worked for him. This was back in the early 1980s.

At the age of 16, my son had developed epilepsy, and had been in the care of the doctors attached to the then Authority for the Intellectual Handicapped. We tried several GPs in the area, with a mixed reaction. Our current GP has a very good understanding of most of my son’s problems and is generally guided by my and his support workers’ opinions. We tried a couple of neurologists. One in Mandurah proved to be difficult to get an appointment with and there was no follow up. The neurologist in Bunbury told me that Mothers like me made him very cross as we expected miracles and tried to tell me that I didn’t understand half of my son’s problems. As a result of this we started to visit the specialist medical services provided by the Disability Services Commission (DSC) at the current head office. This worked very well as we had one specialist who had an understanding of all my son’s different problems and worked well with the local GP and we developed a really good partnership.

When DSC ceased the specialist services, we were again looking for a neurologist who understood all the attendant problems my son has. This proved


Our Stories

very difficult - we ended up at the Royal Perth Clinic because we could video conference without travelling to Perth. However it takes a long time for information from consultations to filter through to the GP and this delay can sometimes cause difficulties.

Recently my son developed problems with his sleeping patterns, which seemed to be from an anticonvulsant, which had been added to his many other medications, to control his seizures. He is stimulated by sedatives, no-one wanted to listen to this. Instead, he was continually given a higher dose of the problem drug (sedative) and the problems kept getting worse. He became desperate, frustrated and aggressive - spitting out his medication as he didn’t like what it was doing to him. He has been escorted three times to Busselton Hospital by police. A psychiatrist was called in and he prescribed an anti-psychotic drug. My son was severely affected by the concoction of drugs and sleeplessness ensued for over 6 weeks. He injured himself during this time due to sleep deprivation. Additional sleeping drugs and antipsychotics were given to him. Finally in desperation I asked that he be put somewhere to dry-out from all the drugs and start again.

I finally got someone to take notice of me that sedating him so heavily made things worse. On one occasion it took four security guards to hold him down while medical staff tried to sedate him - for 1 hour and 40 minutes. I was eventually allowed in and asked that he be rolled over. After some time they allowed this and he was out like a light. “We should have listened to Mum earlier” was the comment. He spent a week in the High Dependency Unit where he was treated for pneumonia which he had developed and the problems stemming from his injuries resulting from his fall.

I convinced the consultant and pharmacists that sedatives didn’t work. They didn’t decrease the anticonvulsant which caused the problem in the beginning, instead concentrating on getting him well and home so the Royal Perth Clinic could manage the medication change. After being home for four days my son was injured during a seizure and returned to Bunbury Regional Hospital. This time they treated his injury and decided to work with the specialist in Perth and start a medication change. I finally felt that I had a partnership with the consultant and that he had developed a proper understanding of my son’s special needs.

This would never have happened if there was one person with a wide knowledge of the attendant problems that people with my son’s various disabilities have. There is no-one out there who has oversight of all the various drugs given and each person called in just thinks another drug will do the trick. It has taken six months to get somewhere with all of this and it has been a very harrowing time for my son, his family and his support workers.


Story 3 - A Mum’s perspective

I know what I need when my son is unwell, so I purposefully chose to go to Princess Margaret Hospital (PMH) as opposed to a GP. I knew as soon as the GP saw my son had Cerebral Palsy, we would be asked to go to PMH. I had previous knowledge of some of the medical terms previously used to speak about my son's medical condition. The Doctor really listened to what I had to say. I had detailed understanding of my son's history and was able to share that information with the attending professional. The Doctor included my son in the conversation and acknowledged him as valid rather than speaking through me. Many professionals speak only to me as they 'assume' that because my son has a physical disability he also has an intellectual disability.

Story 4 – My story

I'm brain injured. I fractured my back in early November 2012 and was admitted to Fremantle Hospital late in November as I could no longer walk. It took three admissions and four discharges!

I was discharged too early three times. The first time I had to wait three days till I was seen by a home assessor who took one look at me and called the hospital social worker to say this woman needs to be in hospital, I'm sending her back! The second discharge was threatened by my doctor that if I did not leave he would get a psych assessor who would come and have all my rights taken away.

Once in emergency I kept politely asking for a drink or something to eat. I kept being informed by nurses they were too busy. After 22 hours I became distressed and asked in a loud voice - if after 22 hours may I have something to eat and drink. Another admission a nurse manager said ‘H’ why do you keep coming back? If I was not happy with the service I had at Myers, I’d go to David Jones! She felt quite at ease comparing health care with retail outlets.

I have many examples of less professional treatment from some medicos...


Our Drawings Appendix 2

At the public forum attendees were asked to share their personal stories on communication in health settings/situations through the use of art and drawing. The following drawings are a selection of these drawings and have also been used for the cover of this report:


Consultation Advertisement Appendix 3 Ministerial Advisory Council on Disability and the Carers Advisory Council

Public Consultation

Sharing Healthy ConversationsThe Ministerial Advisory Council on Disability (MACD) and the Carers Advisory Council (CAC) has partnered to bring together people with disability, carers, and health professionals to explore effective communication practices. The feedback from the public forum and submissions will result in a report to the Disability Services Minister Helen Morton MLC and Seniors and Volunteering Minister Robyn McSweeney MLC.

Public Forum

Date: Wednesday 22 August 2012Time: Morning Session 10am to 1pm, Registration from 9:30am

Afternoon Session 2pm to 5pm, Registration from 1pmVenue: Boulevard Hall, The Boulevard Centre, 99 The Boulevard, Floreat

Forum format: There will be group discussion and opportunities to use art and stories to communicate. You may attend either the morning or afternoon session.Lunch will be held from 1pm to 2pm. Participants from both morning and afternoon sessions are invited to share lunch.

RSVP: By Friday 17 August [email protected] or Georgia Stewart 9382 1844 or mobile 0401 937 924 (for deaf and hard of hearing people)

Please advise of any access / dietary requirements or communication support you may need to participate. Parking vouchers are also available.If you are unable to attend you can still provide input. For the information sheet and questionnaire visit our website www.macd.wa.gov.au or contact us.

Contact Details:Phone: 9426 9269 | E-mail: [email protected] | Fax: 9226 2316 | Freecall for country callers: 1800 629 269 | SMS: 0402 622 388 (for deaf and hard of hearing people) | Web: www.macd.wa.gov.au | Post: PO Box 441, West Perth WA 6872


http://www.macd.wa.gov.au/




Information Sheet

Information Paper Appendix 4

Ministerial Advisory Council on Disability and the Carers Advisory Council

Public ConsultationSharing Healthy Conversations

It is important that all voices are heard when planning and organising medical assessment and treatment, so good communication is vital.

The Ministerial Advisory Council on Disability (MACD) and the Carers Advisory Council (CAC) has partnered to bring together people with disability, carers and health professionals to explore effective communication practices.

Seniors and Volunteering Minister Robyn McSweeney and Disability Services Minister Helen Morton are keen to know what enables effective communication between individuals with disability, carers and health professionals.

About the Consultation

This consultation aims to give people with disability, carers and health professionals the opportunity to provide their experiences and ideas to the Ministers. The information will be collated and analysed to find common themes which may inform future policies, procedures and education of people with disability, carers and health professionals.

About the Councils

Ministerial Advisory Council on Disability (MACD): The role of the MACD is to advise the Minister for Disability Services on issues that impact on the lives of people with disability, their families and carers. MACD is an independent consumer based body and exists to ensure these issues are adequately represented to Government. Membership consists of up to 14 people who are people with disability, carers, family members, service providers and advocates. Visit www.macd.wa.gov.au for further information.

Carers Advisory Council (CAC): The Carers Advisory Council advises the Minister for Seniors and Volunteering on relevant issues for carers and provides an annual report on the compliance of reporting organisations with the Carers Recognition Act. The Carers Advisory Council consists of up to ten people who are carers or people who know about supporting carers. All bring a range of knowledge and experience of the caring role. Visit www.communities.wa.gov.au/serviceareas/carers/Pages/CarersAdvisoryCouncil.aspx for further information.

Submissions close Wednesday 3 October 2012





How to provide comment

We have provided a number of ways so that all people can have a say. Choose your preference from the options below.

If you need help completing the questionnaire please contact us.

Online:

Questionnaire Easy English / Compic version

Microsoft Word version:

Questionnaire Easy English / Compic version

Visit our website www.macd.wa.gov.au for the online questionnaire or Word document or contact the office to obtain a questionnaire.

Send your submission by email, post or fax before 3/10/12 (details below).

Public Forum

Date: Wednesday 22 August 2012 (see flyer)Time: Morning Session: 10.00am to 1.00pm

Afternoon Session: 2.00pm to 5.00pmVenue: Boulevard Hall, The Boulevard Centre, 99 The Boulevard, FloreatRSVP: by Friday 17 August 2012 to Georgia Stewart 9382 1844 or

[email protected] or mobile 0401 937924 (for deaf and hard of hearing people)

Forum format: There will be group discussion and opportunities to use art and stories to communicate.

This project is also looking at best practice consultation processes. If the above methods of providing comment do not meet your needs please contact us.

Contact Details:Email: [email protected] Address: Sharing Healthy Conversations

Attn: Gail Ambrose, PO Box 441, West Perth WA 6872Telephone: 9426 9269 - Gail AmbroseFreecall: 1800 629 269 (for country callers)

0402 622388 (for deaf and hard of hearing people)Fax: 9226 2316Website: www.macd.wa.gov.au






Questionnaire

Questionnaire Appendix 5

Ministerial Advisory Council on Disability and the Carers Advisory CouncilPublic ConsultationSharing Healthy Conversations

Please return the questionnaire by Wednesday 3 October 2012 via:

Email: [email protected]

Fax: 9226 2316

Post: Sharing Healthy Conversations Ministerial Advisory Council on DisabilityPO Box 441, West Perth WA 6872

General Information

Your personal information will remain confidential.

Personal identifiers will not be used in the report.

Personal stories will only be included if the permission form has been in-cluded (see section 6 for “Permission to use stories”).

There are no right or wrong answers. If you feel uncomfortable in answering a particular question or you feel a question is not relevant to you or your situ-ation, please ignore the question.

Comments from participants will be summarised and provided in a report to the Disability Services Minister and the Seniors and Volunteering Minister.

If you have any queries, please contact Gail Ambrose on 9426 9269 or [email protected] or 0402 622388.

Submissions close Wednesday 3 October 2012





Definitions of Perspectives

Person with a disability: A person who has a long-term physical, mental, intellectual or sensory impairment, which in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.

Carer: A person who (without being paid) provides ongoing care or assistance to another person who has a disability, a chronic illness or a mental illness, or who is frail.

Family member: A family member of a person who has a disability, a chronic illness or a mental illness, or who is frail, but does not provide direct ongoing care.

Health Professional: A person who helps in identifying, preventing and/or treating illness or disability.

Advocate: A person or organisation that promotes, protects and ensures people with disability and their carers have a full and equal enjoyment of all human rights to enable community participation.

About youProvision of the following information is optional; however it will assist us in summarising the information for the final report to the Ministers.

Your Perspective:You may choose more than one.

Person with a disability

Carer

Family member

Health Professional Type/s of service:

Service Provider Type/s of service:

Advocate

Other Please specify:

Your age group or the person/s you care for:

0 - 6 7 - 18 19 - 35 36 - 64 65 – 80 81 – 100 100+

Type/s of Disability: (optional)


Questionnaire - Sharing Healthy Conversations

1. Information Flow Between People

When attending a health service a person with a disability may be accompanied by their primary carer. The health professional may have two people to talk to, both of whom have useful and different information.

We want to know what enables the health professional, person with a disability and/or carer to exchange information effectively.

Imagine an interaction you have had in a health setting.

1.1 Who gave you the information?

1.2 How was the information provided to you?

1.3 What made it easy or not to understand?

1.4 Who was included in the decisions made about treatment and future planning?

2. Effective Communication

This section is about how you know when you’ve had effective communication with a health professional, individual and/or carer.

For example, you could include in your responses what effective communication looks like, feels like, sounds like and where and when it happens.

2.1 What do you think effective communication is when receiving / providing health and medical services?

2.2 What is needed to support effective communication between all key people?


Health professionals, individuals and/or carers all have expertise. The health professional knows clinical signs of disease and ways to assess and manage illness. They know the theory and overarching principles. The individual is the expert about their illness currently and historically, what is peculiar to them alone. The carer is expert in knowing the details of what works when at home, at particular times of day and in specific situations.


This section is about how to ensure everyone’s expertise is shared and incorporated in health services’ assessment treatment and future planning.

3.1 What is your understanding of expertise in a health setting?

3.2 What can be done to support individuals and/or carers to provide their expertise in the health setting?

3.3 What challenges and opportunities are there for health professionals in relation to listening to individuals and/or carers?

4. Confidentiality and Privacy

Some carers have found that confidentiality and privacy can limit communication for the effective care of the person they’re caring for. Alternatively some people with disability find that their privacy has been compromised by lack of confidential communication. Health professionals may find that they are caught between both parties.

This question is about how to balance these two ethical principles to allow the health professional to act in the best interests of the patient.

4.1 What do you think the difference is between confidentiality and pri-vacy?

4.2 What information do you think should remain confidential?

4.3 Can a person’s privacy be over-ridden? If yes, why/when?

5. Further Ideas

While Australians have one of the best health services in the world it is possible that consumers have ideas about how they can improve.

Do you have any further suggestions about how communication between people with disability, carers and health professionals could be improved?

6. Your Story

This part is optional.

Would you be willing to provide your story to be included in the report?

If Yes, please complete the “Permission to use stories” below and the "Participant Details" on the next page so that we can contact you OR alternatively you can include your story with the questionnaire (written or typed) or as an attachment with the online questionnaire.

Yes No


Permission to use stories

I, (name) ____________________________________________________, (address) _____________________________________________________(telephone) ___________________ (email) __________________________

give my consent for my personal or family story/stories, as provided during the Sharing Healthy Conversations consultation process, to be used in the final report. I am aware that the report may become a public document, tabled in the State Parliament of Western Australia and posted on the MACD and CAC websites.

Signature __________________________________________________Date: _____/_____/_____

Please note that in accepting personal or family stories, the Ministerial Advisory Council on Disability and the Carers Advisory Council reserve the right whether to include your story and to make editorial changes in relation to length and clarity. However, these changes will not attempt to change the ‘spirit’ or intent of the story. Your personal details will remain confidential and will not be published.

7. Participant Details

This part is optional. Please provide your details if you would like to be included in the distribution list to receive ongoing information on the consultation.

Name: Address: Phone No: Email: Organisation:If applicable

Thank you for participating

Published by the Ministerial Advisory Council on Disability and the Carers Advisory Council, Western Australia.July 2012© Copyright Ministerial Advisory Council on Disability and the Carers Advisory Council, Western Australia, 2012.This publication is copyright. No part may be reproduced by any process except in accordance with the provisions of the Copyright Act 1968.Authorised by the Ministerial Advisory Council on Disability and the Carers Advisory Council, Western Australia - PO Box 441, West Perth, Western Australia.


Questionnaire

Questionnaire Easy English / Compic Appendix 6

Ministerial Advisory Council on Disability and the Carers Advisory Council

Public ConsultationSharing Healthy Conversations

Please fill in the questionnaire and send it back to us by Wednesday 3 October 2012. You can send it by email, fax or post.

Email: [email protected]: 9226 2316Post: Sharing Healthy Conversations

Ministerial Advisory Council on DisabilityPO Box 441, West Perth WA 6872

Information about the questionnaire We will make sure your personal information is kept private. We won’t use your name or other personal details in the report. We will only use your story in the report if you give us permission. You can

give your permission by filling out Section 6 “Permission to use stories”, at the end of this questionnaire.

There are no right or wrong answers. We want to hear what you have to say. If you don’t want to answer some of the questions, that’s ok. It’s up to you. We will put together all the information from all the questionnaires and then

write a report with what people said. We will put some people’s stories in the report too. We will give the report to the Disability Services Minister and the Seniors and Volunteering Minister.

If you have any questions about anything in the questionnaire, please con-tact Gail Ambrose on 9426 9269 or [email protected] or 0402 622388.

Information about you

In this first section, we ask you for some information about yourself.

The first part is about who you are, for example whether you are a person with a disability or a carer or if you have a different role. Here is some information to help you decide which box to tick. You can tick more than one box.

Person with a disability: This means a person who has an impairment. An impairment can mean that it is harder to move, learn, see or hear. An impairment can also make it harder to join in like other people do.




Carer: This is a person who cares for another person without being paid. A carer cares for a person with a disability.

Family member: This is a family member of a person who has a disability, but is not a carer for the person.

Health Professional: This is a person who helps to work out why you are sick, prevents people getting sick and treats people who are sick or mentally ill.

Service Provider: This is a person or organisation that provides services to help people with a disability and/or their families.

Advocate: This is a person or organisation that speaks up for people to make sure they have the same rights as other people.

Please fill out the section on the next page.

About you

This information will help us to write the report. It is up to you whether you give us this information or not. You can leave it blank.

How would you describe yourself? You can choose more than one.

Person with a disability

Carer

Family member

Health Professional Type/s of service:

Service Provider Type/s of service:

Advocate

Other Please specify:

Your age group or the person/s you care for:

0 - 6 7 - 18 19 - 35 36 - 64 65 – 80 81 – 100 100+

Type/s of Disability: You don’t have to answer this question


Questionnaire - Sharing Healthy Conversations

1. Sharing Information

When you go to a health service as a person with a disability, you may have a carer or support person with you.

The health professional may need to speak to both of you. Both of you may have useful and different information.

We want to know what helps everyone in this situation to get the information they need.

Think of a time when you were at the doctor’s or other health service.

1.1 Who gave you the information you needed?

1.2 How did they give you the information?

1.3 What made it easy or hard to understand?

1.4 Who made the decisions about your treatment and what would happen after that?

2. Good CommunicationIn this section, we want you to tell us what you think helps with good communication when you are with a health professional, individual and/or carer.

You can use examples if you like to tell us about times when communication was good for you. This could include where it happened, who was there, what people said or did that was helpful and how you felt at the time.

2.1 What do you think good communication is when you are/ receiving health services?

2.2 What helps to make good communication happen between all the people involved?



Expertise is a word that means ‘being an expert’. Health professionals, individuals and/or carers all have expertise.

The health professional is an expert who knows about the signs of illness and how to treat it. They understand why illness happens and what could happen to a person who is ill.

The person with the illness is an expert on how they usually feel and how their illness makes them feel.

The carer is an expert who knows what works best for the person they care for when at home, at different times of the day and in different situations.

This section is about how to make sure everyone’s expertise is shared. It is also about how to include all the expertise in the way health services do their assessments, treatment and planning for care and treatment in the future.

3.1 Please tell us what YOU think about expertise in a health setting?

3.2 What can be done to support people (individuals and carers) to provide their expertise in the health setting?

3.3 What do you think might make it difficult for health professionals to listen to individuals and/or carers? What do you think would help them to listen?

4. Confidentiality and PrivacyThere are rules about confidentiality, to keep people’s information private, but sometimes people have problems related to confidentiality.

Some carers have found they can’t get some of the information they need to provide the best care for the person they care for.

Some people with disability find that their information has not been kept private, against their wishes.

Health professionals may find that they are caught between both people’s wishes.


This question is about how the health professional can think about what everyone is saying and then do what is best for the patient.

1.1 What do you think confidentiality is? What do you think privacy is?

1.2 What kinds of information do you think should be kept private?

1.3 Do you think there could be any health situations when other things might be more important than a person’s privacy? What would these be?

5. Any More Ideas?People who live in Australia have one of the best health services in the world, but we would like to hear your ideas on how to make it better.

Do you have any other ideas on how people with disability, carers and health professionals could talk together and understand each other better?

6. Your Story

If you want to tell us your story, and you are happy for us to use it in the report, you can give your permission by filling out the Permission form below and the Your Details form on the next page.

When you have written or typed your story, you can send it to us with your questionnaire.

Your story, or part of your story, might be included in the final report. Your name and details will be kept private.

Permission to use stories I, (name) ____________________________________________________, (address) _____________________________________________________(telephone) _______________ (email) _____________________give my consent for my story to be used in the final Sharing healthy Conversations report. I know that the report may be read by other people in the community and in the State Parliament of Western Australia, and will be posted on the MACD and CAC websites.Signature _____________________________________________Date: _____/_____/_____


7. Your contact details

You don’t have to give us your contact details, but if you do, we can send you more information about this project and others in future.

Please provide your details if you would like to be included in the distribution list to receive ongoing information on the consultation.

Name: Address: Phone No: Email:

Thank you for taking part!

Published by the Ministerial Advisory Council on Disability and the Carers Advisory Council, Western Australia.

July 2012© Copyright Ministerial Advisory Council on Disability and the Carers Advisory Council, Western Australia, 2012.

This publication is copyright. No part may be reproduced by any process except in accordance with the provisions of the Copyright Act 1968.

Authorised by the Ministerial Advisory Council on Disability and the Carers Advisory Council, Western Australia - PO Box 441, West Perth, Western Australia.

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