Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?
Louise Wright and Steve Jones gave an update on current and planned guidance, the updated guidance can be found on the Coronavirus hub of the APF website in the frequently asked questions section: https://www.actionpf.org/information-and-support/coronavirus/faqs
Concerns raised at the meetings were:
- Implications for those on transplant list
- Access to flu and other vaccinations
- If a partner or close family member were going back to work what were the risk to the person who was shielding
- Maintaining activity levels, preventing loss of fitness and the psychological impact of Covid-19
APF are exploring further resources and advice that may be helpful.
A reminder that if anyone hasn’t previously registered for online priority shopping slots on the government website the deadline date for this is 17/07/2020. The link to register is: https://www.gov.uk/coronavirus-extremely-vulnerable
NB: If you have already registered previously, then you do not need to re-register
Impact of Covid-19 for people with PF
Steve Jones reported on the work that Prof. Gisli Jenkins was undertaking to understand the impact on those with PF who have been admitted to hospital with Covid-19. The report will be available soon and will be on the APF website. Early indications show a higher risk of mortality for people with PF who are admitted to hospital with Covid-19 and have a Forced Vital Capacity (FVC) less than 80%.
Lung Function Tests and Spirometry
A question was asked if APF could look at home spirometry – what is the value and any recommendations on which one. Steve Jones responded that the University of East Anglia are currently having discussions regarding this, related to the work they are doing on anti-reflux medication and the impact on the progression of PF.
Feedback APF Survey
Preliminary findings were presented, and a written report will follow shortly.
Fundraising Plans for PF Month & IPF week during September
“Create a Stir” will soon be launched and you will be able to sign-up on 1 August in readiness for September. The idea is to host a party, coffee morning, cocktail evening, milkshake party, etc. Anyone joining would donate to take part. Materials will be available, including APF branded cocktail stirrers and straws, so if anyone is interested in taking part please contact the Fundraising Team firstname.lastname@example.org
Webinar – Open to all
Dr Richard Allen on Wednesday 2 September at 8pm will kick-off PF Month by giving a talk about his research. He is investigating the genetics of disease progression and classifying disease subtypes for idiopathic pulmonary fibrosis. The project compares the DNA of individuals with IPF to identify the genes that explain why some people experience very severe disease whereas others have milder symptoms. This will improve our understanding of IPF and hopefully lead to the development of new treatments which are better targeted to the individuals who are most likely to benefit from them. Details on how to register will be on the website shortly.
Debra Chand gave feedback on the Carers Focus Group that had met during Carers week on the 10 June. This is a start of a journey to understand the needs of carers and how APF might respond.
The themes that were identified were:
- Role of the Support Groups
- Peer support for carers
- Information at the point of diagnosis
- Awareness and understanding of PF by GPs, and other healthcare professionals
If any carer is interested in joining the Carers Focus Group please contact Debra at support@APF.org
Telephone Support Line
The Support Line is to provide a listening ear. People can self-refer or be referred – if you are referring on behalf of someone, please ensure you have their permission. 7 Volunteers have been trained and each have a supervisor. Although early days, there has been good feedback. This complements the medical support line and does not replace it.
To make a referral please:
Telephone: 01733 475642
Congratulations to Clive
Clive from the Tameside Group shared his epic coast to coast challenge (equivalent of 293 kilometres or 182 miles) completed on his treadmill at home during lockdown. Clive you are an inspiration to us all and deserve a well-earned rest. Funds raised will be shared with APF and PF Trust.