1. Care | Valued | Excellence | Innovation Breathlessness Clinic: a non- pharmacological approach Julie Southon, Specialist Nurse Supportive and Palliative Care Team

2. Care | Valued | Excellence | Innovation Dyspnoea, shortness of breath, or air hunger, is the subjective symptom of breathlessness. The clinical definition of dyspnoea is an uncomfortable awareness of one's breathing effort. It is a normal symptom of heavy exertion but becomes pathological if it occurs in unexpected situations. In 85% of cases it is due to either asthma, pneumonia, cardiac ischemia, interstitial lung disease, congestive heart failure, chronic obstructive pulmonary disease, or psychogenic causes. Treatment typically depends on the underlying cause. English Dictionary online

3. Care | Valued | Excellence | Innovation The experience of breathlessness is a difficult and frightening symptom that both patients and carers feel helpless to control. It can have a profound impact on the quality of life, affecting almost every activity of daily living. It is a challenging symptom to manage and one that requires a multidisciplinary, patient-centred approach. Where pharmacological methods are only partially effective, the need to identify alternative ways of helping patients cope is essential. Stent 2001, Nursing times

4. Care | Valued | Excellence | Innovation Breathlessness occurs when the demand for oxygen is greater than the body's ability to supply it Raynard and Ahmedzai, 1990

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6. What causes chronic breathlessnes? COPD ILD including IPF Brochiectasis Allergic alveolitis Heart failure Lung cancer Pulmonary hypertension Occupational lung diseases, e.g asbestosis, mesothelioma

7. Care | Valued | Excellence | Innovation The physiological response to this demand is to increase the respiration rate, the emotional one to experience the fear of breathlessness Gill Stent 2001

8. Care | Valued | Excellence | Innovation What types of support can help? Pulmonary rehabilitation Local support groups e.g Breathe Easy or expert patient groups Community respiratory teams – multi-professional Breathlessness intervention services e.g Papworth Breathlessness clinic

9. Care | Valued | Excellence | Innovation Breathlessness Clinic Nurse led outpatient clinic Physiotherapy and Occupational therapy input Tailored according to the individual needs of patient Patients are encouraged to bring close relative/friend

10. Care | Valued | Excellence | Innovation Holistic Assessment

11. Care | Valued | Excellence | Innovation Time spent helping the patient understand the physiological basis of the breathlessness is real and believable Also educating the patient about the ‘bank balance’ of their breath and how they can use it more sustainably Nurse, physio and OT will utilise pacing strategies at heart of sessions Motivational value of retaining focus on realistic goals Investment

12. Care | Valued | Excellence | Innovation Nursing approach Gaining a sense of whether anxiety and panic is part of the patients experience of breathlessness Re-educate patients focus on activities – ‘start to finish’ Fan therapy Galbraith, 2010, Journal of Pain & Symptom Control Informed discussion around acupuncture

13. Care | Valued | Excellence | Innovation Physiotherapy approach Assessing exercise tolerance and how much time recovery is a factor Emphasis on pacing to allow for activity to be more achievable Consideration of deconditioning as a factor Aim to improve quality of life

14. Care | Valued | Excellence | Innovation Occupational Therapy approach Functional assessment of Activities of Daily Living (ADLS) Aim to optimise their ability to function independently where possible Assessing carers perspective/needs Motivational approach on quality of life

15. Care | Valued | Excellence | Innovation Summary Clinic provides a quality approach and time to be able to explore what the patient’s breathlessness means to them Sessions with follow up provide better outcomes with changing behaviours, improving coping Useful to reframe prognosis and community support

16. Care | Valued | Excellence | Innovation Can we improve our service? A comparison between the 2014 & 2016 audits. Notably, the majority of patients “strongly agree” or “agree” that the services provided are still beneficial. In the latest audit only one person disagreed that it was beneficial, but left no comments as to why they felt that way. Patients were asked to comment on aspects of the clinic they found the most beneficial. The comments received include relaxing, supportive and that patients liked that they were listened to and had the opportunity to talk to someone.

17. Care | Valued | Excellence | Innovation What can we improve? It was suggested that we could provide acupuncture on a twice weekly basis A suggestion of massage being provided was made

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