Clydeside Action on Asbestos
A key objective of Clydeside Action on Asbestos is to provide information, support and advice to people with an asbestos related condition. One of the ways we meet this objective is through the promotion of self management and the development of self management resources.
By involving our service users we identified that there was a need for more information to be available about the different asbestos related conditions and ways to manage them following diagnosis.
With our support group members, we agreed that the best way to address this was to develop a self management toolkit that would contain the information our support group members would have liked to have had when they were diagnosed.
It was important that any information that we produced was useful, relevant and reflected the experiences of our members. We therefore wanted the people who are living with an asbestos related condition to be at the centre of the planning, development and evaluation of the toolkit. Each of our support group members contributed to this at our support group meetings and their input has been invaluable.
We also had the support of the medical profession, and formed working parties in Ayr, Aberdeen, Edinburgh and Forth Valley consisting of respiratory health care professionals, and a few of the support group members from these areas who could represent people living with an asbestos related condition. The working parties were established to assist with the content and development of the factsheets and provided a forum for CAA members to share their experience of being diagnosed with, and living with an asbestos related condition on an equal basis with healthcare care professionals.
The toolkit contains four leaflets: a Personal Stories leaflet, a Managing Breathlessness leaflet, a Hints and Tips leaflet and a Frequently Asked Questions Leaflet. The essence of the toolkit is reflected in the philosophy of one of the support group members who contributed to the Personal Stories leaflet;
‘I can’t change the fact that I have an asbestos related condition but I can choose how I live my life. I stay positive and do everything I can do to enjoy life.’
When a person is diagnosed with an asbestos related condition they can experience many different emotions such as fear, anxiety, shock and anger. Some of our members wanted to share their lived experiences of how they felt when they were diagnosed and how they feel now, in order to provide support and address some of the concerns people may have when they are first diagnosed. The emerging themes from their stories were:
- the importance of understanding your diagnosis and understanding what you can do to manage your condition.
- the importance of planning daily activities, doing them at a comfortable pace and prioritising what needs to be done in a day
- the importance of staying active
Frequently Asked Questions
The questions in the Frequently Asked Questions leaflet were gathered from our support group members over a series of support group meetings. We wanted to capture the type of questions that our support group members would have liked to have asked when they were first diagnosed, and the questions that they may still not know the answers to. The medical questions were answered by respiratory heath care professionals who sat on our working parties that were established to facilitate this project, and respiratory physicians who support the project.
We wanted to address ways to manage breathlessness, one of the main symptoms of an asbestos related disease. We spoke to the support groups to find out when our members became breathless and in which situations. We found that there were three main types of situation where breathlessness occurred;
- the type of everyday breathlessness associated with exertion such as walking, using stairs and doing housework
- periods of increased breathlessness where their symptoms occurred in response to environmental factors such as weather conditions or strong smells
- breathlessness associated with anxiety and stress.
By using the members experiences of breathlessness we were able to split into three sections; Managing Everyday Breathlessness, Managing Increased Breathlessness and Anxiety, Breathlessness and Fatigue. Each of the sections were developed and evaluated by the support groups and working party members.
Hints and Tips
All of the hints and tips were gathered from our support groups over many sessions.
Prior to compiling the hints and tips for the leaflet, our members would naturally share this type of information with group members during their conversations. We wanted to harness this for the benefit of all our service users, so we set about gathering them for the leaflet.
Whilst some of the hints and tips may seem like common sense to one person, we know from listening to our members that the same tip can be invaluable for another, and we wanted to reflect this in the leaflet by highlighting to the members that no hint is too obvious to include.
The value of the resource is that it has been developed by people living with an asbestos related condition for people with an asbestos related condition.