On Wednesday 30 July we held our UK Support Group Leaders' Meeting. The meeting was well attended with updates on a number of issues and exciting news about what is happening for PF Month and IPF week in September.
Here are some highlights from the meeting:
Leaders expressed concern that as the Covid-19 situation continues to unlock, it will be harder for people with PF or carers who are shielding to ensure safe access to services. There was a consensus on the need for caution, and appreciation of the ways that APF are working to support groups during this time, particularly through information, peer support and campaigning:
COVID-19 – SHIELDING & FACE COVERINGS
The link to the new guidance on Shielding from the 1 August is on the APF website:
Guidance from the four nations:
The link to guidance for how and when to wear a face mask and how to make your own, printable and downloadable images for people who are exempt and other resources available:
Gov.uk: https://www.gov.uk/government/publications/face-coverings-when-to-wear-one-and-how-to-make-your-own (includes printable exemption documents)
Hidden Disabilities: https://hiddendisabilitiesstore.com/?SID=43ad95c3c8c40e7353aa9c57ea1a2ee4
Lions Green Cross Bottle: https://www.lions105sc.org.uk/projects/health/messageinabottle.html
APF are developing a Lanyard which will have the APF logo on it and a credit card sized card that can be attached.
To complement the APF nurse-run support line, APF has launched a telephone support scheme. Volunteers who are a mix of people with PF, carers, and former carers are offering a listening ear and peer support by phone for people with PF and carers during the Covid-19 crisis, particularly through the long periods of isolation that can arise when shielding at home.
The calls include a check that people are getting the support they need and signposting to other services, including PF support groups and the charity’s nurse-run Support Line. The impact has been positive; some recipients choose to continue with a weekly or fortnightly call, others feel they do not need further calls as a network of support has been created, such as referrals to a Support Group, or other services.
The link to the APF website for more information is: https://www.actionpf.org/news/new-telephone-service-reaches-out-to-people-with-pulmonary-fibrosis
The scheme is open to referrals by health professionals, support groups and self-referrals. Anyone who would appreciate a call should let the APF team know on support@APF.org or by calling 01733 475642.
FUTURE PRIORITIES & TRAINING
APF are looking at how they can prioritise the needs and issues that are brought to its attention, such as Covid-19, weight loss, pulmonary rehabilitation, oxygen, benefits, carers, coughs, information at diagnosis, treatments, raising awareness of APF, bereavement, etc.
The meeting supported the use of an on-line survey to help prioritise the issues and the development of on-line training.
PULMONARY FIBROSIS MONTH & IPF WEEK IN SEPETMBER
The key messages during the month will focus on the challenges that Covid-19 has created, but the opportunity is there to put the spotlight on PF with the potential link between Covid-19 and PF. This is the time to talk about a PF precipice regarding a potential surge of cases.
To raise the profile of Pulmonary Fibrosis, APF, as in previous years are securing a well-known person to help get the message out to the wider population. There will be a call to action letter that everyone will be able to send to their MP. APF will be writing to Matt Hancock, Secretary of State for Health and The Ministers of Health in Scotland, Wales & NI. There will be dedicated press campaigning in each of the Nations as well.
APF have been very impressed with the challenges and events that people have embarked on during the Covid-19 lockdown.
During PF month there are 3 ways to get involved and to raise awareness:
- Create a Stir
- Go the distance
- Write to your MP
Create a Stir – Virtual milkshake making, cocktail/mocktail evenings, coffee mornings. Merchandise will be available, e.g. coasters, paper straws, cocktail stirrers, etc.
Go the Distance Challenge event – the challenge can be big or small, e.g. Go the Distance might be 3 laps round the garden or could be a half marathon.
The sign-up forms will be on the website from the first week of August and merchandise will be available towards the end of August ready for September.