For some consumers it can be challenging to attend meetings, read long documents, provide regular feedback or commit time on an ongoing basis to work on serious issues if they (or their family member) are not well. Your health service or organisation understands this, but believes that your contribution is still of value, even when you cannot contribute consistently. Make sure you let people know if you cannot fulfil an expectation, and they can brief you about what you missed when you are feeling better.

If you have to travel long distances, pay for petrol, public transport, or parking, speak to your health service or organisation for support. You should not be out-of-pocket because of your involvement.

For some committees or groups there may be significant pre-reading prior to meetings. Health care and research are full of long documents! If you’re finding this overwhelming, speak to the staff who invited you to get involved to find a solution.

According to one experienced consumer one of the challenges of involvement is knowing when to speak up, and when to remain quiet on issues of great importance. Developing a clear sense of who you represent can make this easier.

‘I think the really big thing that I try to impart onto new consumers coming along is that it is very much about being part of a team. It’s not about trying to right past wrongs and having that little soapbox to stand up on. Sometimes when we feel strongly about those things we have to just keep our mouth closed because it’s not the right moment, and it’s not the context of what we’re talking about.

So I think it’s about being a mature professional in what we do, and about being mindful of what hat I am wearing today, who I am representing, and what I am here for.’

--Leonie Young, Consumer, Former Chair CanSpeak Queensland

Health care is an area with great complexity and, as a result, change doesn’t generally happen overnight. Consumers can find the pace of change to be a challenge and often have to reorder their thinking to take a ‘long view’ of influencing the system.