The trials and tribulations of forming an ILD support group

Conway, John and Nikoletou, Dimitra (2021) The trials and tribulations of forming an ILD support group. In: European PF Patient Summit 2021 : Patients Driving Change; 23-25 April 2021, Online. (Unpublished)


Background Support groups provide crucial support for patients, carers, family and friends. Many research articles highlight the patient benefits from attending these groups. However, it is not guaranteed that every new support group will be successful or will survive beyond its 'honeymoon' period. This poster presents lessons learnt in setting up an ILD Support Group. The intent is to help others establish similar support groups so that they are self-sustaining, safe and supportive communities for patients, families and healthcare professionals. Introduction: Following his diagnosis of IPF in 2015, John Conway found that there were no local support groups for his condition. He joined with another patient, Les Gresswell and a research physiotherapist, Dr Dimitra Nikoletou, to form an ILD support group based at their local NHS Trust. The group’s first meeting was in September 2016 and we continue to hold regular meeting since then. Methods: Other patient support groups were contacted to find out what made a group successful and what were the pitfalls. It became clear no two groups were alike in how they operated, how they were structured or financed, or what level of support they received from other organisations such as charities or NHS bodies. However, common themes emerged, including: developing a safe, supportive, welcoming and social environment; providing education, advocacy and access to research; providing outreach to those newly diagnosed and collaboration with allied healthcare professionals. It was also important to identify committee members who were willing to contribute to the overall running of the group; had sufficient time to devote to the group's activities; had some key skills relevant to establishing a support group. Considerations/risks: A number of key considerations were identified, including: - Some form of committee structure was needed to ensure running of the group was spread out. - As people join support groups to receive support, they are not necessarily willing or able to volunteer to be part of a committee. - The committee needs to consider the group as a whole and ensure that different opinions are heard and different conditions are represented within the group. - Patients and families/carers might have different needs from a support group and this tension needs to be acknowledged. - Ensuring that newly diagnosed ILD patients can be referred seamlessly to the local support group. - From February 2020 the Covid-19 pandemic has had a significant impact on all groups and on society as a whole. - Covid-19 has presented both challenges and opportunities and these will be discussed in more details in the poster.

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