Background A retrospective study into the experiences of pulmonary fibrosis patients and carers identified holistic assessment and carer support as the main unmet needs of this client group. Pulmonary fibrosis is generally a rapidly progressive disease, causing great physical and psychological distress to those affected. The disease trajectory of Pulmonary fibrosis differs from Chronic Obstructive Pulmonary Disease (COPD) but often they are treated together in exercise and support groups.
With the aim of addressing the lack of specific pulmonary fibrosis support and to meet patient and carer needs a hospice based pulmonary fibrosis support group was established.
Method A twice monthly group was established within the Hospice of St Francis, led by a specialist palliative care physiotherapist with support from a palliative care nurse specialist. The sessions include a patient-led exercise programme and conclude with relaxation. Regular speakers join the group covering topics from future care planning, cognitive behavioural therapy, diet, fatigue management and social services.
Each patient completes a holistic needs assessment and we are commencing the use of Well-being star outcome measure tool to evaluate effectiveness. Carers are invited to complete a carer’s support needs assessment tool (CSNAT).
Conclusion and future goals The group is still in its infancy. The aim is for sessions to be patient led with a nominated patient or carer as chairperson, treasurer etc.
We are engaging with local respiratory groups, lung clinics and Pulmonary Fibrosis charities to reach out to as many patients and carers within Hertfordshire and bordering counties and expand/establish the group further. The most effective form of advertising has been through social media.
Carer focus is developing with plans to host education and peer support sessions. Our aim is to arm carers with knowledge, build confidence in regards to symptom management and future care planning.
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