Dr Ann Hutchinson and Prof Miriam Johnson are researchers at the Wolfson Palliative Care Research Centre at the Hull York Medical School. They are on Twitter @AHutchinsonHull and @MJJohnson_HYMS
We know that living with breathlessness can be very difficult for both patients and their friends and family members.
Doing everyday things like cleaning and going shopping take a lot of effort. People may need help from others which can make them feel frustrated and down because they can’t do everything that they used to be able to.
“The emotional thing is extremely, extremely important. You don’t get the understanding… you can just like get caught up in a downward spiral and you end up in this little place all by yourself… ”
It can be hard for family members who can feel worried and isolated too.
“It ain’t just me; it’s my family as well, they have to go through it as well, people tend to forget them… they just think about the person whose got the illness, not the people they’ve got around them and it does affect them big time, they get emotional, they’re frightened.”
“We often feel lonely and on the edge of things.”
Breathlessness also makes people worried or frightened. At these times they need support from clinicians.
“I am all the time worried—worried when this breathing will attack me again.”
Bringing Breathlessness into View – a multimedia exhibition
We would like everyone to understand more about what it is like to live with breathlessness. We have worked together with people who experience daily breathlessness and local artists to make an exhibition called Bringing Breathlessness into View.
The exhibition has striking images and engaging sound recordings to help people understand what it is like to live with breathlessness. We hope visitors will find the exhibition thought provoking. Additionally, we are giving out information on how to live better with breathlessness so that people know there is something that can be done.
“I feel like Sleeping Beauty. The hedge has closed around me and I cannot do anything about it.”
These are three images from the exhibition to express both how difficult it is to live with breathlessness and also that it is possible to keep on going.
Dr Dan Roper, GP and chair of NHS Hull CCG, who will be opening our exhibition in the British Lung Foundation’s Love Your Lungs week commented: “Breathlessness is a symptom of a wide range of medical conditions and it can be particularly challenging for people who live with it. It’s wonderful to see how art is helping to bring the voices of local people to light and share their stories in a way that both educates and inspires others. Breathlessness can be difficult, but there are ways to effectively manage the symptom and continue to lead a full life. It has been enlightening to support the recent research from the Hull York Medical School and we hope that their findings, along with the insights gleaned from this exhibit will help our clinicians offer the best care possible.”
There are things that can be done to help people live better with breathlessness
We want everyone to know that there are things that can be done to help people live better with breathlessness. There are many ways that patients can cope with breathlessness.
We have produced a booklet for patients and carers with practical things they can try to help them manage their breathlessness day to day, which can be downloaded from the Hull York Medical School website. This booklet incorporates information from the Cambridge Breathlessness Intervention Service. Further information is available from the British Lung Foundation website.
Many people find there are ways to cope with their breathlessness and have good lives. As one patient said:
“I’ve sort of changed my life. You can’t do the things you used to do, so you’ve got to say ‘‘well, okay, what can I do?’’ and do it.”
Clinicians can provide support and help people manage their breathlessness better. By focussing on breathlessness as a target for treatment in its own right, clinicians can support patients to adopt better self-management techniques so they can live well with breathlessness.
“She has got me organised and now I understand how the disease works. As a result, I have had a good summer. It makes me feel more resilient.”
To read more about our research and how clinicians can help people live well with breathlessness see our BJGP article.
