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5. To assist the provider to realise the importance of safety and compliance around service provision so consumers feel safe when receiving the service

Following the education session the provider expressed satisfaction with the friendly process and information provided. Posters are now displayed on the wall and the brochures available on a table for consumers.

A new information sheet was developed to be given to consumers prior to treatment. The mobile service is no longer operational.

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Educating consumers with disabilities

Education Session ~ consumers with intellectual, cognitive, brain injury, physical and mental health disabilities

The advocate organised the following resources for this one hour session. A large airy well lit room with easy access for wheelchairs. A large whiteboard and coloured pens. Caregivers were encouraged for those with high needs. A supply of Code of Rights and advocacy brochures were also available.

Most of the 30 consumers who attended this session came from residential homes.

The advocate introduced herself and then to gain knowledge of who may know about advocacy the question was asked - 'what is advocacy?' Some consumers were able to give one word definitions of what it meant to them. The advocacy brochure was used to highlight the advocacy role, the rights and how to contact an advocate. Many showed a real interest in the photos which prompted the advocateto focus on a more visual presentation where she would use the whiteboard and ask lots of questions to encourage participation.

With coloured pens in hand the group discussed the role of advocacy which a few were able to clarify and simple statements were written on the board. Consumers were encouraged to and did share instances where they had been able to self advocate and have their issues resolved quickly with the provider.

Consumers were particularly interested in Rights1, 2, 3 and eventually 8. Regardless of which of the other Rights were discussed the consumers always referenced back to Right 1. Examples relevant to their current situation were used by both the consumer's and the advocate to discuss how their Rights were being enacted.

The consumers enjoyed being part of a social group that allowed them to socialise with others and look out for one another. They realised that letting their providers know if they were concerned about anything would lead to positive outcomes - making their service better.

The empowerment continuum was 'modelled' to show the process of empowering consumers to advocate for themselves or others. Different scenarios were given to the consumers and they had to choose where that issue might sit on the continuum. For example if they saw it as a small issue it might sit in the middle - if it were a huge issue it would lean more to the disempowerment extreme. To move toward the empowerment extreme it was important to acknowledge the issue appropriately in the first instance (examples of good communication were given) and then further steps taken always toward the empowerment side.

The session ran over time and a number of consumers approached the advocate to thank her personally for the session. She was particularly moved by another who could barely speak but wanted to shake her hand. Everyone went away with information about the Code and the advocacy service.

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Education session has a domino effect in the 'Therapist' community

An advocate was invited to provide an education session at an Annual General Meeting of the local physiotherapy board. This had been the first time in five years that the advocacy service had been invited to such a forum.

Directly after the session a number of attendees approached the advocate wanting to book some further advocacy sessions for their own organisations.

As a result the advocate presented a session to the local Diversional Therapist Group which consisted of 15 diversional therapists from 15 rest homes in the region, and two further education sessions for local medical centre based physiotherapy groups.

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Educating mental health consumers on the Code

The advocacy service was approached by a newly appointed mental health consumer advisor to initiate a regular three monthly series of education sessions with consumers across eight in-service settings.

To date they have met twice with these groups, the first time as a general overview and the following session focusing on Right 1 - respect. They plan to work through each of the Rights with each group.

Initially two advocates met with each group so that the consumers got to know them, then went on their own, swapping groups regularly.

The reason for this initiative was primarily to ensure consumers knew who their advocates were and what their rights are, but also to build relationships with staff and consumers. Some in-service settings have a higher turnover than others so each group are a slightly different composition each time; therefore the advocates begin with a brief summary of their role and an overview of the Code.

The advocates have responded to feedback which asked that they stay around after the session so consumers can approach them if they want to. They have run the sessions very informally due to varying degrees of wellness of participants at any time, being flexible and responding to questions raised.

The advocates will meet with the consumer advisor to debrief on the process so far and to see if it needs any modification. Overall it was very worthwhile.

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Introducing the health passport to mental health consumers

An advocate was asked to introduce the Health Passport to a group of Mental Health Consumers at their day-based programme. She was told that there would probably be six to eight consumers and asked if it would be alright for some of their support staff to attend. The advocate confirmed with organiser that she would be happy for staff to attend, but suggested they talk to the consumers and ask if that suited them.

The advocate arrived at the day-based programme to the smell of freshly baked savoury scones and coffee brewing on the stove. There was a large group of consumers and two staff members present. She was warmly welcomed by one of the group, offered scones and coffee which was gladly accepted and after settling down at the large family-sized table began the presentation.

The advocate's plan was to introduce the Health Passport, so she handed out copies to all present and proceeded to talk about the benefits of having their own personalized book. The response was great and all of the participants could think of great things to include in their Passport.

The advocate found this group to be very interactive and that they were pleased to know that good things were happening for them to manage their health information appropriately.

At the end of the presentation, one of the members stood up and offered a vote of thanks on behalf of the group, then presented the advocate with a jar of their homemade chutney.

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Network connection leading to education for a consumer group and provider training

As a new advocate my first step to building connections with local rest homes and retirement villages in my area was to send a letter introducing myself as the new advocate. This letter outlined my role and also described the presentations and training I could provide at no cost to consumer or provider groups.

Following this initiative, I was contacted by a provider who had had very little previous contact with the advocacy service. They requested I provide education to a group of their residents. When I met with this group, they were interested and actively participated in the session. They told the manager of their enjoyment.

Due to the success of this consumer education session, I was able to discuss with the manager providing education for the staff. This has now been booked.

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Turning around a negative rest home experience

An advocate was reminded how powerful strength-based interactive learning is when faced with a cautious audience.

She was asked to do an education session at a rest home. As part of the preparation for this session she spoke to the education manager of the facility. As well as asking about the numbers attending and the room being used, the advocate asked her what were her expectations were for the session.

The education manager talked about wanting the staff to review their knowledge of the Code of Rights and the role of the advocate. She also went on to say that there had recently been a negative story in the newspaper about the facility and some of the staff were feeling that it had been unfair, biased and did not accurately reflect the facility or their commitment to the residents and to their work.

The session went well. The advocate noticed that over the course of the session some who had looked like they did not want to be there, unfolded their arms and sat more upright. The advocate talked about the Code of Rights and had a short powerpoint to go with her verbal presentation. She included the staff by asking questions like "What does respect look like to you?" and "Does anyone here have a loved one in a rest home?" It got them talking and asking more questions about Rights.

Toward the end of the session the advocate handed out sheets of paper and pens and asked them to get into small groups and write their own headlines about the facility or compose an ad to attract residents. The staff were very enthusiastic about this task. They interacted well with each other and there was some laughter as well as heads down working on the task.

The 'headlines' and the 'ads' that were produced were then read out and explained by one person in each group. Here are some examples:

94-YEAR-OLD DEFIES THE ODDS

I FEEL SO MUCH MORE CONFIDENT NOW SAYS 89-YEAR-OLD RESIDENT

BEAUTIFUL GARDENS, FRIENDLY WELL TRAINED STAFF

COME AND JOIN US AT...

APPETISING HOME COOKED MEALS

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Introducing rights and the health passport

An advocate facilitated an education session for five residents in a residential care facility.

The residents had a varying degree of understanding and ability to participate. The advocate used the "You have rights" booklet, which is illustrated and written in plain language, to discuss their rights and how to speak up.

The group sat at the dining table and introduced themselves. One of the residents was a young man in his early twenties and seemed very reluctant to be there. The advocate "checked in" with him a few times over the hour to make sure he was OK, and to reassure him that he did not have to participate if he didn't want to, and that they were all happy to see him.

He began to relax over time, and though he did not actively participate and chose not to complete an education survey form, he was laughing and smiling with his house mates by the end of the session.

One of the young women was very good at advocating for the other residents, and encouraged them to participate. The advocate provided them with a pictorial health passport and talked about who can help to complete them. They enjoyed reading the "You have Rights" booklet together and all agreed that learning about their rights was the best thing about the session.

Along with a copy of the "You have rights" booklet, and a health passport, the advocate also gave them each an advocacy promotional magnifier. They had such fun with them!! They looked at each other through the magnifiers and one of the residents noticed that the advocacy 0800 number is written on them. They showed me around their house and asked me to come back again.

The young woman told me she thought I should do the same thing with all of the other residents in the other homes in town, "They need to hear about their rights".

The session was a success for everyone.

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Successful education session

An education session was requested by a DHB Customer Services Manager to be delivered to the Customer and Risk Service Team.

This education session was based on an introduction to the Code of Rights and the Advocacy Service.

The previous advocate had an ongoing professional relationship with the Customer Services Manager and had frequently offered education services for the staff but this had not been accepted until recently.

The initial session was to be viewed by the Risk Service Team (11 individuals) for the possibility of it being delivered to all staff on a regular basis. A basic PowerPoint session on the Code and the role of advocates was delivered along with personal reflections of the Cartwright report and anonymous scenarios, to vary the delivery. The audience were encouraged to ask questions and the session was interactive.

There were many questions raised, in particular, about the most common concernss for consumers, and which aspect of the Code was breached most frequently. This was identified as poor communication from a provider and possible solutions to this were put forward by the group. It was identified that many complaints might not have eventuated if there had been more effective communication in the beginning.

The advocate requested feedback from the group on how relevant the presentation would be for staff and what could be improved. The advocate received positive feedback and constructive suggestions on the sequence of the slides, which were reorganised before the first staff education session.

The team also requested that more scenarios be included to illustrate aspects of the Code and this was included. 12 further sessions were booked for staff.

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Educating a GP service on cultural needs

GP ~ Education session ~ Right 1 ~ Meeting cultural needs

An advocate was invited to participate as a guest speaker in two separate cultural workshops for a local GP Service consisting of approximately 70 staff.

The workshop was coordinated by the GP Service Director and a local Kaumatua in the community. Each workshop was 2.5 hours long and was organised into two parts.

The first hour consisted of a presentation from the advocate around the Code of Rights with a specialist focus on respecting cultural values (Right 1). The second hour consisted of a presentation from local DHB and PHO staff with a specialist focus on Maori customs and the Treaty of Waitangi.

Each session commenced with a formal powhiri inclusive of light refreshments prior to the commencement of presentations by the guest speakers.

Those who attended commented that the experience was valuable both on a personal and professional level. This also provided a valuable opportunity for the advocate to engage with Maori consumers and provider services.

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Education & networking reaches core community groups

After establishing a regular network with the local Taiwhenua, an advocate was invited to provide an education session to a group of forty-five staff from the Hauora provider organisation.

In the month following the training the advocate engaged in a number of networking sessions with various provider staff who had attended the session. As a result of establishing these networks and maintaining ongoing contact, the advocate was invited to present another Advocacy/Code of Rights session at Te Taiwhenua, this time with fifty Kaumatua from around the Ngati Kahungunu region.

It is networking and education sessions such as this that spread the word to local people who may have need of the assistance advocates can provide.

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Great outcome from an NZSL education session

Education session ~ Supported living ~ Right 5 ~ Effective communication ~ Deaf ~ Communicator/interpreter

The consumer, who is Deaf, normally lives independently in supported living accommodation. Although he uses NZSL he has minimal language skills so uses a communicator.

The hospital plan was for him to be discharged to a residential home to recuperate. Unfortunately, the consumer was not informed of this plan and so when he arrived at the facility he refused to go anywhere but home.

The morning after he was discharged the facility coordinator and another staff member visited his home to administer his medication. The consumer was roused from his sleep. Frightened by finding two people in his home he drove them out before he received his medication which resulted in his being hospitalised again.

Shortly afterwards, the consumer attended an advocacy education session presented in NZSL. At the conclusion of the session the consumer requested a meeting with the advocate to discuss his concerns. Having heard the presentation the consumer was aware of how an advocate could support him and the options available for bringing the matter to the attention of the provider. He elected to write to the manager of the facility to express his concern about there being no communicator/interpreter with them when staff entered his home.

He received a response which contained an apology and an assurance they would request advocacy training on the Code for both consumers and their staff. He was happy that he had been heard.

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Training the future

Education & training session ~ Community Contact Week (CCW) ~ 3rd year medical students ~ Open disclosure

Each year one of the advocates works with a number of third year medical students for their community experience. This particular session involved four students spending six hours with the advocate. Many of the students at this point in their training are not sure which area of medicine they wish to focus on. The CCW gives them a feel for what is out there and what it is like to work in the community.

The advocate presented a session to the students on the Code of Rights and the Nationwide Health and Disability Advocacy Service. They were able to understand how the Code impacts on them when they are on their work placements in the hospitals or community. The students also did Open Disclosure training which gave them an opportunity to see how easily things can go wrong. There was much discussion and they raised some really good questions.

The advocate then arranged visits to a mental health service and an intellectual disability day service, so they could see a range of services.

The students had the opportunity to speak with consumers and providers on these visits. The focus for them was to find out as much as they could about community services and what was available.

The feedback the advocate received was very positive. The students advised that the time with our service had been very worthwhile and it helped them to understand the Code of Rights in more detail as well as the role of a health and disability advocate. They had had lectures on the Code of Rights, but these did not go into the depth that the advocate did.

All in all a very positive experience for our future medical professionals and they were very keen to learn.

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Training the future

Education & Training session ~ Community Contact Week (CCW) ~ 3rd Year Medical Students ~ open disclosure

Each year the advocate works with a number of third year medical students for their community experience. This particular session involved four students spending six hours with the advocate. Many of the students at this point in their training are not sure which area of medicine they wish to focus on. The CCW gives them a feel for what is out there and what it is like to work in the community.

The advocate presented a power point session to the students on the Code of Rights and the Nationwide Health and Disability Advocacy Service. They were able to understand how the Code impacted on them when they are on their work placements in the hospitals or community. The students also did Open Disclosure training which gave them an opportunity to see how easily things can go wrong. There was much discussion and they raised some really good questions.

The advocate then arranged visits for the students to a mental health service and an intellectual disability day service, so they could see a range of services.

The students had the opportunity to speak with consumers and providers on these visits. The focus for them was to find out as much as they could about community services and what was available.

The feedback the advocate received was very positive. The students advised that the time with our service had been very worthwhile and it helped them to understand the Code of Rights in more detail as well as the role of a health and disability advocate. They have had lectures on the Code of Rights, but these did not go into the depth that the advocate did.

All in all a very positive experience for our future medical professionals and they were very keen to learn.

Speaking up really works

Education session ~ Speaking up ~ Self advocacy ~ Strength-based approach

A young man with a physical disability attended a 'Speaking Up' workshop co-facilitated by the health and disability advocacy service. He subsequently signed up for another workshop and was delighted to report that after the first workshop he went back to his residential facility and used the skills he had learned to resolve an issue. He had wanted to have a certain Sky channel put on and staff were preventing him from doing so. He had brought this up in the practical side of the first workshop and the advocacy facilitators had helped him work through the issue using the strength-based five-column approach. He went home and put it to the test resulting in staff allowing him to have the channel he wanted.

The consumer was so impressed by his new-found skill he started advocating for his fellow residents who were very grateful to him. When he heard there was another workshop, he put his name down to participate again.

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Educating 'advocates'

Education training ~ Self advocacy ~ Intellectual disability ~ Dhoices ~ Survey forms

Recently, I had an opportunity to meet with a group of adult people with an intellectual disability who were completing an educational module of self advocacy. Although I have worked in the area for a number of years I always find it a pleasurable challenge to do these kinds of educational sessions; the pleasure being the unexpected dialogue and the challenge being the unexpected interpretation that arises from the dialogue.

To develop some safety for the group, I started the session by asking about a good thing that had happened recently for everyone. The answers included a birthday celebration, a passed learner's license, studying to do a learner's license, and a new job. What achievements!

I then started the education by asking everyone where I worked. An office that made telephones was my favorite answer (mmmm….may have to change the wardrobe). Knowing the group already knew the word advocacy, I asked who was an advocate in the group. Not so surprisingly they named other people like staff, friends and family. Continuing to use a strengths-based approach I then changed the question to "who likes to make choices?" Everybody liked that so it was easy to draw out examples when each person had asked for things they like to do…movies, favorite restaurants and rugby. "M" gave endless examples of his recent birthday choices…the invitation cards, rugby tickets, as well as the Cabbage Tree Restaurant. After considerable conversation and pride I proclaimed that they were already advocates and did not know it!

Once we had established they were already advocates, I asked what happens if sometimes it's a bit scary when wanting to ask for something. Disappointingly, the main theme was to "back off". This lead to a further conversation about who was safe to talk to for support when being an advocate. I added that we also assist people who want to advocate for themselves!! I pulled out our pamphlet and to my surprise they already had one. Excellent! I said that I worked with some of the people on the pamphlet. They managed to find the big bold 0800 number. A safe link was hopefully made between the pamphlet and me.

For the evaluation I trialed the forms with the visual faces and scaling questions. Overall the goal was to assist the group to identify with the word advocate and, secondly, about options for assistance when advocating felt scary.

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Education session for a migrant families' autism support group

An advocate was invited to present to the support group about the role of the Health and Disability Commissioner, the Code of Rights for people living in NZ, and how the Nationwide Advocacy Service can assist people to resolve complaints.

It was the first time this particular group had heard about advocacy and HDC, so they were keenly focused on linking the Code of Rights to their own life circumstances.

Many of the participants shared their concerns about the difficulties they have communicating with providers. They told the advocate that it is particularly difficult for those with English as a second language, as well as lacking the confidence to speak up.

The group were pleased to know they can receive support from advocacy when they need to, and that an advocate can assist them to self-advocate when their concerns do not fit under the HDC Act. At the end of the education session two people approached the advocate requesting she contact them as they required her support to address their concerns.

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Posing the right questions to get those with intellectual difficulties to speak up

Training workshops ~ Intellectual/learning disability ~ Speaking up

Throughout some workshops it was often difficult to tell whether or not the information provided was being understood by the consumers present, or was of any use to them.

During one workshop the following scenario was presented for discussion:

- an elderly gentleman was being discriminated against by rest home carers because he was deaf. He felt intimidated because they constantly shouted at him. The question to those attending the workshop was "What could this man do?" A woman, who had been silent throughout the entire workshop and clearly found communicating difficult, suddenly said: "He needs to get a hearing aid." This simple yet profound solution to the man's problem confirmed the woman was actively taking in the content of the workshop.

Another scenario was about:

- two women shouting at each other in a car park following a car accident. The question was posed to the group: "How could these women communicate better without the need for shouting? A man who had also been silent for most of the workshop and had difficulty communicating, instantly said: "They both need to calm down."

It was just so heartening to know that sometimes in situations when you have no idea whether your words are being understood or being of any use, suddenly someone quietly gives you a response to show they do understand and are listening.

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Keeping consumers informed of their rights

An advocate has ongoing contact with a private hospital keen to provide information about the Health and Disability Code of Rights to their inpatients. As well as access to advocacy education sessions, consumers are able to view the Health and Disability Commissioner's DVD via the in-house television in their rooms. The DVD provides everyday scenarios related to the 10 rights of the Code. This is shown on a continuous loop system making it possible for consumers to view as they choose.

The DVD is also included in the orientation programme for new staff so they are aware of their responsibilities when working with consumers.

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Collaboration in Education

Education session ~ Vocational centre ~ Self-advocacy ~ IDEA services advocate

An IDEA Services advocate contacted the health and disability advocacy service to request the local advocate visit to provide a 20-minute education session for consumers at his vocational centre. They discussed the appropriate resources she should take and agreed on the advocacy brochure and the Code of Rights banner.

Upon arrival, the advocate was met by the IDEA advocate who introduced her to the group. He explained why he had invited her, and encouraged the participants to listen and ask questions. They were quite excited about the banner and asked lots of questions about it. He was very good at keeping the group focussed on the Code, and what the advocate was saying and would often reinforce her comments.

At the end of the session he encouraged the group to complete the evaluation forms so they could give feedback about the session. The advocate gave them a choice of forms to complete. Most chose the form with the faces. Having the IDEA advocate actively involved throughout the session proved to be very effective in giving the consumers confidence to ask their questions.

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Health Expo Display provides excellent opportunity to promote rights

Education ~ Information Display ~ Health Expo ~ Code of Rights ~ HDC ~ Advocacy Service

An advocate was invited to have a stall at a local Health Expo. Her display included a range of pamphlets about the Code of Rights, HDC and the advocacy service. The information was available in a number of languages. She also erected large banners with the 10 consumer rights of the Code in both English and Maori along with large posters of the Rights and advocacy service. She remained by the stand to hand out information and answer any questions from those passing by.

The display attracted a great degree of interest from both the public and other stall holders. A number were not aware of the advocacy service and didn't know they have rights when using health and disability services.

The advocate found having an information stall at such a busy expo to be very worthwhile. She described it as a great opportunity to promote information about consumer rights and the advocacy service to the public.

As a consequence, a number of consumer groups requested education sessions. Others were able to discuss their concerns and learn how an advocate can support them, as well as strategies to self advocate.

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Whose decision is it?

Educating a provider ~ Rest home ~ EPoA

A social worker contacted an advocate about the rights of a daughter concerned about her mother being kept in a rest home. The social worker said the daughter wanted to care for her mother at home. However, when she approached the rest home manager she was told she could not remove her mother from the rest home.

The advocate explained that it was important to establish whether the consumer was competent to make her own decisions. If she was, she could work with an advocate herself, or she could delegate the authority to manage her complaint to her daughter. An advocate would then be able to assist the daughter to resolve the matter on her behalf of her mother.

Although the daughter had an EPoA it became apparent that there was no understanding of how it works and when it becomes enacted. The advocate was able to provide information about EPoA for the social worker to pass on to the consumer's daughter.

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Word of mouth is the best endorsement

An advocate was invited to present an education session on the Code and the advocacy service at the local Citizens' Advice Bureau. There was a large turnout with many questions about rights and how the advocacy service could help.

At the conclusion of the session a woman spoke of her experience of working with an advocate to resolve a complaint. She said she would strongly recommend the service to everyone.

She went on to say that although she considered herself to be a strong and articulate person, the situation she had been in had left her feeling very vulnerable and powerless. She said she would not have been able to resolve the matter if she had not had the support of an advocate. She told those present how pleased she was with both the resolution of her concerns and the support she had received from the advocacy service.

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Making an education session for Kaumatua and Kuia memorable

An advocate had two hours to provide a stimulating session about making a complaint.

At a previous session on the Code of Rights, a Kuia said 'we like our visitors to act and look professional and to be exciting and vibrant as well'. She had told the advocate how they look forward to their day programmes as it is the only opportunity for some of them to be stimulated and learn new things.

With this in mind, the advocate chose to use a power-point presentation with a number of humorous video clips with key messages that make a point and provide light relief.

The advocate arrived on the day well prepared, dressed in her brightest coloured dress and determined to have fun with the group.

The session started with a quick introduction to the advocacy service including the history and reference to the Code of Rights. Many had seen the posters in the hospital and at medical centres.

Throughout the session those present shared their experiences of both good and bad care. Some had dealt with the situation as it arose and others wanted to make a time to see the advocate at the end of the session. It was obvious they felt more comfortable with terms such as concerns or problems rather than complaints.

A video clip of Mr Bean at the Dentist was shown. This proved to be very popular with everyone laughing and prompting a discussion on how 'frustration can be damaging' if left unresolved. A video clip on road rage clip was also well received as an example of what can happen if things get out of control.

At the conclusion of the session the group said they felt more confident to speak up and tell the provider, or contact an advocate, if they had a concern. When asked why, someone replied 'so we don't crash our cars'! The advocate was pleased to have made such a positive impression with the group, leaving them laughing at the joke.

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A communication problem in a rest home provides the best staff education

Rest home ~ Right 5 ~ Effective communication ~ Interpreters ~ Education session

A few days before a booked education session on effective communication for rest home staff, the manager emailed the advocate about a request from a resident. This resident had difficulty communicating and wanted to meet with the advocate at the end of the session.

Following the session the advocate and interpreter met with the resident to discuss the resident's needs. They then met with the manager where the resident was able to convey these needs with the help of the advocate and interpreter working together to make sure they were clear about what was being said. The outcome of the meeting was very positive. Both parties had learnt more about each other.

Some time later the manager contacted the advocate to say the resident wanted to see the advocate again for help with another situation that had arisen.

At this next meeting the manager requested information about how to contact interpreters. The advocate and the interpreter then worked with the resident to communicate with staff about some of the more common words the resident used giving the staff a better understanding about what the resident was saying. The resident felt their world was changing for the better because of the advocate's assistance. In addition, having the Code of Rights Poster displayed in the resident's room was a constant reminder to speak up when things were not OK.

The resident was thrilled when the advocate suggested an electrical device that would help achieve better communication and a much easier way to communicate with others.

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Consumer-centred education session for providers

An advocate received a request to provide an education session for a group of providers from different agencies who dealt with consumers with head/brain injuries, as well as for the consumers themselves. The advocate had been informed the consumers would be the majority of those present so had planned a session on "Being an active Participant in your Healthcare". However the advocate arrived to find there were no consumers.

After a brief discussion on what the advocate had planned, the providers requested to hear the session as they wanted to know how it might feel for consumers, and felt it would provide a good learning experience for them.

Using strength-based questions, the providers were asked to identify scenarios where they felt a consumer's rights had or had not been observed. The feedback from the group was that they found this exercise useful in making them think about their own actions.

One provider spoke about what she had considered to be a lack of support for a consumer who was transferring from rest home care to their organisation, stating she had offered training and her offer had been ignored. When asked how the consumer felt about the support being offered, the provider stated she had not thought to ask and immediately realised that if she was observing the consumer's rights then she needed to communicate with the consumer rather than doing what she thought was the right thing without knowing the consumer's views.

Another commented that the session had made her think about how disempowered consumers can be if the organisation does not work from a consumer-centred model. At the conclusion of the session everyone agreed that it was important to always come back to the consumer and their rights.

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Educating Health Care Students

An advocacy education session for aspiring health professionals covered the Code of Rights and advocacy. Various examples were provided throughout the session that related to each right. Numerous questions were asked and discussion followed with a number of practical examples provided to show how advocacy works, as well as the implications of the Code.

Following the session, four of the students requested some time with the advocate as they had some concerns regarding appropriate standards in relation to consumers in a local residential facility. Each of the students had been employed by this private agency at different times and had all left for the same reasons - primarily the inappropriate standards, lack of respect and treatment being displayed by management and other staff members towards various residents. They were curious to know how to complain now that they had left.

The advocate asked about what they had done so far. They revealed they hadn't taken any action as they had been told by the employer that everything they had seen or done in the facility was confidential and they had to sign a form stating they would not reveal any information. They had tried to talk with management but their concerns were dismissed. Although they were concerned they were too afraid to do anything.

The advocate spoke about the options open to them, including writing to the Commissioner about their concerns. The advocate encouraged them to include the details about their conversations with management at the facility and what they wanted to achieve by bringing the matter to his attention. The students felt this was the best option given they had attempted to address the concerns with management and had been reminded of the confidentiality form they had signed. The advocate was thanked for providing information, knowledge and giving them the confidence to follow their concerns up in a positive manner.

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'Speaking Up' education session

Education ~ Tell Someone DVD ~ Residential home

An advocate met with a group of six under 45-year-old residents at their home after they finished work. She offered to take them through one of the stories on the Tell Someone DVD. After discussion by the residents it was decided that the 'Staff' scenario would be played. One of the residents got the DVD ready to play and one recorded the discussion.

During the 'discussion' pauses in the scenario the residents made comments about the first staff member who was rude and abrupt. They didn't like the rudeness and said 'she's not very nice' and 'she's got no manners'. They then talked about not watching television during meal times. They all liked the second staff member and commented on her being 'nice, friendly and helpful'. The residents talked about choosing their own meals and helping to cook at least once a week.

A discussion ensued about being able to see family and friends and the way that staff helped them to do that. Having family and friends around for their birthdays was very important to the residents.

The advocate told the residents she felt privileged to have been a part of their group for this discussion. The DVD was instrumental in initiating a really good discussion about their rights. The session concluded with the advocate handing out the wallet size magnifiers. These were very well received with one of the residents using the magnifier to look up a number in the phone book.

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Education session explores the importance of culture

Education ~ Respecting culture ~ Whanaungatanga ~ Kinship ~ Shared understanding

An advocate was invited to provide an education session for fourteen people as part of the induction for new staff employed by a large provider. Twelve were Mäori, one was Fijian Indian and one was European. The advocate commenced the session with introductions (whanaungatanga) to acknowledge the Mäori people present. As is often the case, tribal connections were made. This was a very effective way of getting people to feel at ease.

The advocate found the group enthusiastic and eager to learn about the Code of Rights. The advocate made a point of including humour and relating stories relevant to the work and culture of Mäori. The group quickly became engaged and were happy to share their own experiences of their culture. The advocate came away from the session with a sense of mutual learning about other cultures over and above the focus on the Code of Rights.

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Open disclosure session with rest home staff

An advocate was invited to present an education session to staff at a rest home. Upon arrival the advocate noticed that the staff had attended the previous Code of Rights session, and suggested that they may like to participate in an open disclosure session instead.

The group reported at the end of the session that the topic was useful and interesting, and that the session was interactive.

Staff felt they had a robust and consistent approach to open disclosure with residents and their families, and the session confirmed to them that their own procedures, policies and practices were consistent and effective.

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The Code of Rights for the Chinese community

An advocate was invited to speak to a Mainland Chinese Community group on the Code of Rights, the Advocacy Service and the role of the Health and Disability Commissioner. It was the first time this particular group had heard about these topics, so they were keenly focused on linking the Code of Rights to their own life circumstances. There was great discussion with the group as they identified a high need to be informed.

The advocate, speaking through a competent interpreter, delivered key messages about the contents of the Code of Rights by giving practical examples wherever appropriate, with a thorough explanation of Right 5, effective communication, and interpreter's indispensable role. This focused approach was very appropriate, because communication is often a barrier for this group of consumers who often have English as a second language, and who often do not have the confidence to speak up. Two of the participants, who had previously experienced difficulties with their GPs, were keen to share their concerns.

The group felt the advocate's presentation was helpful to them in terms of developing vital awareness among them about their rights and protections when accessing Health and/or Disability Services in NZ. The information which was new to them, and made them feel empowered to speak up if necessary in the future.

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Education for the Bhutanese community

At the invitation of the Bhutanese Refugee Community the local advocate presented an education session on the Code of Rights and the Advocacy Service. This particular group of people had recently arrived in the country after spending many years in refugee camps.

Using a qualified interpreter, the advocate provided the education session requested, paying particular attention to the Consumer's right to effective communication, as this is an area which can be a major barrier for this specific category of vulnerable consumers who are new to the county, are not able to speak English and have a low level of self-confidence. The audience was interactive, engaging in discussions and reflections on the various aspects of the Code and Right 5 in particular.

Four consumers, who had previously faced difficulties with their primary healthcare providers, wished to share their experiences. They said that interpreters were not provided in spite of their explicit request when they booked their appointments. The lack of interpreters meant there consultations did not go as well as they could have.

The group was pleased with the information provided, particularly when they were given handouts in their own language. They were pleased to know there is a free independent organisation to support them to have their Rights upheld.

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Learning from a complaint

An elderly lady living in a retirement village, whose husband had recently died, had concerns about his care in his final days.

Following a request from Age Concern, an advocate contacted her, and they discussed her concerns regarding dignity and independence. The advocate arranged a meeting with the nurse manager and the family which resulted in an open and frank discussion.

As a result of the meeting, the advocate was invited to the rest home to give a presentation to the staff on the Code, with specific reference to dignity and independence issues. The family was happy with the outcome and pleased that further training was given to the staff.

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Education session for people with hearing impairments

An advocate received a request from a group from the Deaf Association who wanted to hear about the rights conferred on them by the Code. They had elected those who had partial hearing loss to act as the spokespeople for the group and liaise with the advocate.

It was decided the best way to communicate with the group was for the advocate to utilise the skills of those with partial hearing. The advocate showed a subtitled video. Attendees were given the opportunity to discuss and question what they had seen, with someone acting as sign language interpreter for the advocate

Responses to questions were answered both in sign and by the advocate writing answers on large pieces of paper for all the group to see. Attendees were invited to role play the Code with some aspects being conveyed through sign language.

The advocate reported that it was an interesting and sometimes humorous process and the group reported it as being very effective.

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Visit to retirement village

An advocate went to a retirement village to speak to the residents. She took along the 'Great Care Stories' booklet, a Health Passport and guide to filling out a health passport, information on advocacy and the Health and Disability Commissioner. The residents were pleased that this material was free, and that they could call the advocate if they had any questions.

The group asked good questions, and had no complaints. They were very happy and couldn't speak highly enough of the staff, activities and facilities.

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Educating Rest Home Staff on the Code

An advocate used an exercise to demonstrate how staff attitudes can impact on the rights of rest home residents. The exercise used the words AGREE and DISAGREE which were placed at opposite ends of the available space. Staff were then asked about the issues, concerns or topics they wanted to discuss as part of the education session. The following topics were agreed:

1) Residents should be allowed to eat their meals in their rooms instead of the dining room.
2) Residents should be allowed to have sex.
3) Residents should be made to take their medication.
4) Residents should be allowed to wear the clothes they choose.

As each of the four statements above was read out, staff were asked to position themselves between the two words in a position that best represented how they felt about each statement. Participants were not challenged on the positioning they adopted, but each statement created debate. Staff commented that they found the session particularly useful as it challenged their own thinking in relation to consumer rights.

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Educating providers

An audit of a day care facility identified that staff required further training on the Health and Disability Consumers' Code of Rights so they requested an advocate to do this.

A quick assessment at the beginning of the hour-long session established that most of the staff were aware of the Code and that they just needed to recognise how to link it to their work. The goal for the education session was to 'unleash the potential' so that the staff felt the presence of the Code when they were in their work environment.

Resources:

The flipchart

Whiteboard/ pens

Brochures - Code of Rights, Learning from Complaints and Advocacy

The Health and Disability Commissioner (HDC) Act provided the starting point for the session. The two statements that are enshrined in the Health and Disability Commissioner Act were also included in the staff job descriptions and the overall business objectives of the organisation.

Promoting and protecting the consumers of health and disability services by according them their rights under the Health and Disability Consumer Code of Rights legislation.
Facilitating the fair, simple, speedy and efficient resolution of complaints

They discussed how their efforts to plan activities for the consumers that would best meet their needs was consistent with the Code. If all went to plan, the attitude and behaviour of staff would be positive so that consumers would receive a quality service. On the other hand, if planning was not carried out appropriately, the opposite could occur, compromising the rights of consumers as well as the service.

All present said they knew what to do if a consumer raised an issue with them. If they could fix it straight away they would do so, and if not they would refer the matter to the Manager. Usually the issues were fixed immediately. Examples of what could happen during a programme that might compromise a consumer's participation were discussed using the empowerment model/ continuum. All agreed it was best to resolve issues as soon as possible and that their initial response could be the deciding factor for a consumer to feel acknowledged and listened to.

The interaction with staff during this session was positive as they were willing to share information about their roles and their service. It was obvious they enjoyed their jobs and their consumers.

The whiteboard was useful in providing a 'big picture' of where the day centre fitted into the provider services of the MOH - DHB - Private Provider Organisations as well as where the independent health and disability advocacy service fits.

At the end of the session the advocate suggested a session should be organised for the consumers. This was organised soon afterwards.

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Education session to women's refugee group

Education ~ Code of rights ~ Refugees

An advocate was invited to present an education session on the Code of Rights and the advocacy service to a women's refugee group. Within the group there were refugees who had been in NZ since 2000, including people who had spent a number of years in various refugee camps.

The advocate started with an overview of the Code, and then provided a more in-depth focus on Right 5 as communication can be a major barrier for refugees. The group became animated and expressed a lot of interest in this right, as many had experienced difficulties with health providers and wanted to share their experiences. Many had not been offered the services of an interpreter and felt that their experience would have been better had this service been available. Some women felt disrespected and uninformed because of the language barrier and lack of interpreters.

The group felt that the advocate had empowered them with information about their rights, encouraging them to speak up, and providing them with contact details for the advocate if they want support.

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An innovative educational event

Respect ~ Independence ~ Dignity ~ Sexuality ~ Rest Homes

A large rest home requested a presentation for their registered nurses on the Code that incorporated the issues of Intimacy and sexuality in residential homes. The advocate researched the topic and found that a number of countries had adopted a protocol for dealing sensitively with this issue. Some had worksheets that staff, patients and families could use to develop practice guidelines for their facility.

After some initial awkwardness about the topic they settled into the session respectfully by answering the questions in a handout on "Facts and Myths" . This set the scene for very open and honest discussion about the rights of the residents particularly in the context of the Code. It was an approach most of them hadn't given any thought to before.

The changes in the maternity system were discussed as an example of how a service had become consumer-centred. Only a few years ago, childbearing women described "leaving their dignity at the hospital entrance and picking it up on the way out". With the Code, women now know they have rights and they are treated with respect and retain their dignity throughout the pregnancy and birthing process. By making the analogy of this change and looking at the residential care facilities, it was acknowledged that they were well behind in addressing issues such as sexuality and intimacy for the residents.

The advocate encouraged them to continue the discussion with management, other staff, families and the residents. She also left them with resources to assist them in their efforts to work towards introducing a protocol for their facility.

After this initial presentation, the advocate worked with several other rest homes on the same topic. She has encouraged them to organise a day seminar to allow time to draft a protocol that reflects the Code of Rights and gives the residents living in these facilities the freedom to express themselves intimately and sexually, because the 'heart has no wrinkles'."

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Medical Centre session

Doctors ~ Nurses ~ Support staff ~ Rights education ~ Limited understanding

The local advocate was invited to present at a medical centre where doctors, nurses and support staff attended the education session. The advocate presented information on the Code and the role of advocacy. The session was very interactive with lots of questions from those attending. Doctors sought answers about what support and resources they should have when there are concerns the consumer doesn't understand their explanations. One of the doctors from overseas also commented that he thought having the free advocacy service was great as there was nothing like that in his country of origin.

As a result of the positive reception the advocate received, she has been invited back to speak on other topics.

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Session for nurses

Nurses training ~ Rights education

The advocate was invited to present to a group of Pacific Islands Nurses on the Code of Rights, HDC and the role of the advocacy service. In addition to the nurses there were two auditors attending the programme to ensure the training being received met the required standard for the nurses to qualify for on-going training recognition.

As a result of the session being well received, the programme coordinator has given the advocate a regular slot in the nurses training programme and also asked the advocate to speak on the local PI radio.

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