July 09, 2020
Mid Essex Pulmonary Fibrosis Support Group met via Zoom on Friday 3 July 2020. It was a great chance for the Group to meet irrespective of the current lockdown restrictions.
The Group had extended an invite to Gillian Trippner, Regional Support Coordinator South from Action for Pulmonary Fibrosis.
Some of the issues that were raised by Group members was about the ability to access counselling services. Gillian suggested they could access local Improving Access to Psychological Therapies (IAPT) services. The link to the website for the Mid-Essex area is: https://www.northessexiapt.nhs.uk/mid-essex
To find IAPT services in other areas in England the link is: https://www.nhs.uk/service-search/other-services/Psychological%20therapies%20(IAPT)/LocationSearch/10008
Access to Pulmonary Rehabilitation specifically for Pulmonary Fibrosis was another hot topic. The Group felt pulmonary rehabilitation and counselling will help them take responsibility for their health. Lucy agreed to look in to learning from other Groups in the North of England.
Gillian shared an on-line resource that has been developed by the University of East Anglia and Partners, this is particularly aimed at carers who are looking after someone who is breathless. The content is mainly aimed at people with COPD and Cancer, but there is a resource for carers and patients with breathlessness NOT due to COPD or cancer. The link to the website: https://supporting-breathlessness.org.uk/
An area that the Group would like explored is how to encourage District & General Hospitals, GPs and other Healthcare Professionals to be aware of and refer patients, families and their carers to the Mid-Essex Support Group. In response to this, Lucy shared about a day event that is hoped to be organised across Essex. This would likely be a virtual meeting, with patients, families, carers, health care professionals and other interested parties coming together. Some of the areas that could be discussed/covered would be the chance for patients, families and carers to talk about what it is like to live with Pulmonary Fibrosis and the challenges that they face, experts in the field of Pulmonary Fibrosis and feedback on current research.
There was also discussion about promoting the Group in GP Practices, the Group have previously sent posters to each GP Practice, and there was discussion about doing this again and perhaps addressing to the Senior GP Partner and/or the Practice Manager rather than a general mailshot to the practice. A suggestion from Gillian was to send the GP Practices a format of the poster that they could put up on the TV screens that many surgeries have.
Carol also has raised a fantastic £200 by doing table-top sales over several months at her monthly ladies group morning. Carol should be especially applauded for this achievement as she did it after fracturing 3 of her vertebrae! Carol virtually presented her cheque to APF with the donation being ring-fenced for research.
On the 20 September, Ashley is planning a fundraising bike ride from Maldon to Great Dunmow and back again. He is finalising the route and has been liaising with the APF Fundraising Team. As soon as details are finalised then the Group will be updated. There was a discussion on a send-off and welcoming committee and how to promote and celebrate this with the local press.
Amazon Smile – the Group were informed that if you order from Amazon, if you use the Amazon Smile website instead of the main one, you can nominate a charity of your choice (APF could be one of those charities) and Amazon donates 0.5% of the price of eligible purchases to your chosen charity. The shopping experience is the same as if you use the usual Amazon website.