Michele Harris-Tafri, communications manager at ARC South London, interviewed Dr Margaret Elliott about how IPOS is being used to inform and improve care at St Elizabeth Hospice in Ipswich. 

How did collecting IPOS data help control patients’ breathlessness?

"Breathlessness is a common symptom reported by palliative care patients. Breathlessness can cause significant distress to patients and those who care for them; it limits functional activity and reduces quality of life. At St Elizabeth Hospice we routinely collect IPOS data for patients attending the day care unit in order to assess symptom burden and evaluate their progress. IPOS data is collected on their first attendance (week 1) and repeated at weeks 4 and 8. Collecting the data helped me to identify that breathlessness was an area that we were least able to help our patients. It made me step away and think about what we could do to support those patients better." 

What steps did you take to better support patients experiencing breathlessness?

"When I looked through the notes, we were doing all the right clinical things – for example, patients were on the right medications and receiving good care. So, we focussed on the non-pharmacological things. We introduced changes which follow the Cambridge Breathlessness Intervention Service model, with the aim of improving symptom support for patients with chronic breathlessness. These changes focus on the breathing, thinking and function of the patient. For example, we began teaching patients to do their breathing exercises, and also taught all of our staff so that they were able to sit with someone who was feeling breathless and teach the techniques to the family or carers. This meant that if they got acutely breathless at home, rather than panicking and calling an ambulance – their carer or family member could sit with them and help them to relax and do their breathing exercises properly. 

"We also gave out hand-held fans, as there is lots of evidence which shows they help to calm patients. We use relaxation techniques to help with anxiety, including mindfulness, meditation, visualisation and aromatherapy. These can help people to relax and control their breathing." 

What other techniques do you use to help people to control their breathlessness?

"My big crusade is reducing social isolation, where people get trapped at home by their breathlessness. It is about trying to get people out of the house doing simple things to improve their quality of life. There is a lot of evidence about the effectiveness of pulmonary rehabilitation, but a lot of our patients feel too weak and too breathless to attend those sessions. That’s why we run a seated exercise group and simple techniques such as using a pedometer and taking 10% more steps each week, setting it at the patients’ level and working with the occupational therapists to gradually increase their activity levels. We introduced the changes and then collected follow up data at weeks 4 and weeks 8. It was great to see that the data suggests that our changes were having a positive impact." 

What other impacts have you seen from introducing these changes?

"Family members also feel less anxiety when their loved one experiences breathlessness and they can help to calm them and support them instead of dialling an ambulance. It also helps to break the cycle of the same patients coming in and out of hospital for breathlessness.

"The good thing about POS is that it enables us to collect this data more formally and rigorously. The changes we’ve implemented are not expensive or high-tech, in fact we’ve gone back to basics by being less reliant on drugs and spending more time with the patients helping them with their breathing techniques. Another benefit has been that staff morale has been boosted. Staff feel very empowered as they can see that their work is making a difference. They have the data to show them what they should be focussed on and it has facilitated professional development within the team."

How does research into outcome measures help improve care?

"This real-world research helps us to learn and informs our work in the clinical world. The IPOS measures are continuously evolving and this means that we can adapt and improve our care from those changes. I can’t change the fact that these patients have end stage COPD, but I can alter how that impacts on their life. This is what IPOS is about. It enables you to hear the patient perspective – “Is that symptom overwhelming me? Or is it bad, but I am still able to get on with my life and enjoy my life?” I think IPOS has helped us to enable patients to live with their symptoms better and to master their breathlessness."