26 Nov 2014 | Partners in Care
This article from the South Island Alliance shares the experiences of Ruby Aberhart in her role as a consumer advocate for the South Island Alliance's Health of Older People's Group.
Some of the language used in meetings and getting to grips with understanding acronyms are common challenges faced by consumer representatives in clinical meetings. The Health Quality & Safety Commission's Consumer Engagement programme aims to get consumers actively involved in decision making about health and disability services at every level. Consumers who have similar roles as Ruby in Commission work programmes, have discussed this and other issues, in a series of videos.
An important aspect of preparing consumers is to provide training for them and the Commission has recently launched its consumer training package and provided orientation to a group of consumers in regions to deliver this training.
Being asked to join a group of professional clinicians, to help them to make strategic decisions that will affect the future health of older people living in the South Island is no light matter, especially when the person being asked has no clinical background, has multiple health conditions and has just hit 80 years of age. Yet for Ruby Aberhart of Nelson, her passion for helping older people to maximise their potential has led her to accept the role of Consumer Advocate for the South Island Alliance’s Health of Older People’s Group (HOPSLA). Three years on since its establishment we talk to Ruby about the role she’s still active in today.
Q Why did you choose to take on the role of Consumer Advocate for HOPSLA?
“I’ve always been interested in health… In my lifetime I’ve gone from being at bottom of four generations to now being at the top of four living generations! After experiencing a lifetime of health conditions, both myself and within my family, I can see how decisions that we make in health directly affect older people, their quality of life and their families.
In my past I’ve held roles where I’ve helped people to develop their potential - such as during my time at Play Centre, and also as a Netball Coach – and I think we need to do this for Older People: help develop them, maximise their potential and support them to find the right path for them. Being a consumer advocate means I need to understand the needs of older people so that I can be effective. Personally I have multiple health conditions, some of them quite major, and to have them all together is really challenging, so I can talk from first-hand experience about how health services are received by older people, which in the end is what’s important.
Q. What support do you receive from the group, to enable you to carry out your advocate role effectively?
“I found the first meeting a real challenge because the use of acronyms stopped me from understanding the background reading and what was being discussed. I spoke up and so a glossary was introduced, which was great, and from them on if anybody had any new acronyms these were added. Funnily enough others in the group owned up that they sometimes didn’t understand the acroynms either! So it was good to see that by me standing up and speaking out it could benefit all of us.
Members of the group have also been really helpful. Our Chairperson Jenny has been really supportive, for example helping me to be ‘heard’ within a meeting, perhaps reiterating my questions so as to get them better understood, or helping clarify any confusion. Another member on the group – Carole - also provides me with all printed documents in book form, printed in large print and brings them up to me. If I have any questions before our monthly meeting then she is happy to meet me beforehand or after and discuss the points to make sure I’m fully up to speed with the topics. Initially it was hard understanding some of the discussions – it initially felt like a foreign language! But I feel like I understand most of it now.
Previously my late husband Ray, who died 29 years ago, was a great support to me in my volunteer roles, and it is nice to receive support today from those on the group. Without people like Jenny, Carole and Jane to fill that role I would not have been able to have the confidence I have in myself or to clarify what I think. They are a great support.”
Q. What are you passionate about (in terms of health of older people)?
“I believe that all people should be seen as individuals, for example those suffering with dementia…. we need to work out how much we can help that older person to keep on with their journey through life the best way possible. No matter how unwell a person is, they will have a knowledge of where they’ve been or what they’ve done, we just need to find a way to connect with who they are.”
Q What do you enjoy about your role, and what do you find challenging?
“I enjoy the fact that I have made close relationships with some of the people on the group, they’ve also given me a bit of self-esteem, made me realise I have something to give. But I think the thing I enjoy most in my role is that I hope I am doing something that will make it easier for older people, and their families, to deal with illnesses, such as dementia.
Q What have been your key learnings from being a part of this group?
“I realise that I am part of a team and I need to look at the whole picture as best I can. I realise that I have a lot to offer, and whilst I speak a different language from the others it is still a valid one. I also have learnt about many programmes. I think that the Walking in Another’s Shoes (Dementia Education) programme is the most wonderful thing ever! We need to just keep getting out there and keep telling people about it. “
Q What advice would you give others looking to take on a similar role?
"Trust yourself! Trust that you do have knowledge worth sharing, trust that you haven’t gone through life too easy, you have had a lot of valid experiences on your personal journey in you and your family’s life, that are worth sharing. I don’t see problems, just challenges, and every challenge has a solution – you’ve just got to find it.
I am not an academic, and it has taken a while for people to understand my role, but you have to believe in your personal view and be prepared to stand up and challenge the theory and say ‘That’s not what older people think.’"
Ruby was previously awarded the Queens Service Medal for her volunteer work for Play Centre, and was made an Officer of New Zealand Order of Merit in 2007 for her services to health of older citizens and the community.
Chair of HOPSLA, Jenny Keightley says Ruby’s involvement with the group is invaluable: “HOPSLA is a partnership of the five South Island DHBs leads and advises on the development and implementation of new models of care for older people living in the South Island. It is vital that we ensure patient and consumer voices are understood and valued across the health and disability sector. Ruby’s input gives an invaluable perspective.”
“She keeps us all real and asks some really tough questions! We know that by working all together we can develop better health and disability services for all.”
Ruby will be participating in the upcoming ‘Consumer Engagement Workshop’ run by the South Island Alliance on 25 November in Christchurch.