Read the report summarising what we learnt in the first year of the Advisory Groups
Please download it by clicking on the link below.
Getting Involved
Would you like to work with the Cancer Care Research Centre to improve cancer health care services, by helping us with our research?
If yes, please read on...
You may have had cancer or perhaps you helped care for a friend or family member with cancer...What was your experience of cancer care in Scotland ? We want to hear your story - whether it was good or bad. Why? Because by listening to the experiences of people who have been affected by cancer, we believe that we can help influence how cancer services can be improved for all of us. How do we do this? By involving you!
How will people affected by cancer be involved in the research?
There are many ways for people to get involved. People affected by cancer are already advising us on our information leaflets, our website and some sit on our project advisory team.
Discussion groups are a good way for some people affected by cancer to have a voice. We are now setting up local groups of people affected by cancer who will help us to develop our research plans by discussing their experiences and views of cancer services. There will be groups in all areas of Scotland . Each group will involve around 6-8 people. The groups will be helped in their discussions by one of the research team and another person, perhaps from a voluntary organisation (such as CancerBACUP or Macmillan) or a patient involvement worker. They will be responsible for telling the research team at Stirling University about the group members' views.
Why are people affected by cancer being involved in this way?
We want to make sure that our research focuses on issues that people affected by cancer think are important. People affected by cancer will have a strong influence on what we do and we hope that this will produce results that have a real impact on how patients are cared for.
What will be expected of me?
How often the groups meet and for how long is up to each group to decide. We usually meet about once every 3 months for an hour or so. People who take part are only expected to talk about their own views and experiences - we don't expect you to speak for others.
How big a commitment is it?
That is up to you to decide. Some people will be involved in the groups for up to 2 years or more, but you don't have to make that kind of commitment. See how you feel and if you want to pull out at any time, you can. Don't worry if you can't attend a particular meeting. We will always be pleased to see you the next time.
Do I have the right skills and experience?
You don't need any qualifications, special skills or medical knowledge to get involved. The most valuable thing you bring is your experience, both good and bad, and your willingness to share your views and experiences with others.
What support will be offered?
Support will be available for everyone who joins the groups. You will be given a named contact person for support. We think it is important that you know that confidential support is available, in case anything arises at a meeting which you find upsetting, or you need information which we cannot provide.
Any travel costs as a result of attending meetings will be refunded in full.
Other ways of getting involved
Not everyone is able or wants to take part in a group discussion, so people can choose any of the following ways of taking part:
- Sign up online. Click here.
- Writing to us about your experience, by email or post.
- Talking to us one-to-one in person or on the telephone.
- Reading and commenting on documents about our research. This might include articles for the press about our work, reports or work summaries.
- Advising us on the best ways to inform other people affected by cancer, and the public, about the research.
- Helping us to write articles or present information at conferences and meetings.
- Helping us to put together information for our website and newsletter.
- Helping with the website - either by commenting on how user friendly it is, or contributing your story.
These are just some ideas - we are keen to hear your suggestions.
Where are the groups meeting?
We now have groups meeting regularly in Dundee, Perth, Stirling, Wigtown, East Kilbride and Stornoway. Some of these are open to anyone (for example the Stirling group) while others are for people with specific cancers (e.g. the Stornoway group which is for people affected by breast cancer). We may be developing new groups in other areas soon - let us know if this is something that would interest you. We have had one group with Chinese people affected by cancer and another group with profoundly deaf people. We have also met a group of people who had cancer in their teens, and hope to work with them again soon. If you want to know what the groups talked about in 2005, please read the report here.
Throughout 2005 these groups discussed their general feelings and thoughts about cancer care and treatment. This has helped us identify important areas to research. In 2006 we have begun to link advisory groups into specific pieces of work we are doing - for example, asking groups for feedback on the methods we use in our research, to comment on reports or tell us what they think about taking part in clinical trials.
What do groups talk about?
We have already set up some groups across Scotland. If you want to find out a little bit more about them, you can read a summary of the notes we took throughout the first year (2004-2005).
When and where are the next meetings?
You can find out about the next meeting dates here.
What happens next?
If you would like to get involved, or if you would like to talk to us about the work, please contact us by telephone (01786 849260) or email Liz Forbat, our group co-ordinator.
We will be delighted to hear from you. You can find out more, ask questions, and we can tell you if one of our Advisory Groups is meeting in your area. When we have enough people in an area to run a group, we will set up a meeting for everyone who is interested in taking part. You can meet our team and other people who are interested. Then you can see if you still want to be take part. Remember, you can pull out at any stage if you decide it is not for you.
Professionals - we want to hear from you too!
If you are a health care professional working with people affected by cancer in the voluntary sector, there are ways you can get involved too. Contact cancercare@stir.ac.uk for details.
Funding Organisation
This is part of a 3 year programme of work funded by the Scottish Executive.