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Support with CF, COVID and shielding concerns

As the UK gets to grips with what the next phase of the coronavirus (COVID-19) pandemic may bring, our community has raised a number of concerns facing people with cystic fibrosis (CF) and their families, including returning to work and school. Keith Brownlee, Director of Policy, Programmes and Support, offers an update on some of the work the Trust has been doing to support in these areas.

While shielding has officially paused, concern about COVID-19 hasn’t. Many of you have been getting in touch with us, through our helpline and social media channels, to ask questions about how you and your family can continue to keep safe.  

Two of the most common things you ask about is returning to the workplace and education. In response to this, we have updated our online resources to help you make these decisions, and have begun hosting a series of online events called CF LIVE, where we assemble a panel of experts to help answer your questions on particular issues.

In addition to our primary schools’ planner, we’ve also created ‘My CF Planner’ to support young people at secondary school, as well as new university resources.

Dealing with the anxiety that COVID-19 can bring is not easy, and that’s why we have also created our coronavirus hub on our website, with information and resources on issues such as finance and welfare, CF care, shielding and mental and physical health.

As cases of COVID-19 increase across the UK, it’s natural to be concerned and wonder if shielding will return. The current government guideline across the whole of the UK is that shielding is only necessary in specific areas of regionalised lockdown, but like every other group, people with CF should strictly follow the social distancing rules set out by their respective government.

This advice is also backed up by the UK Cystic Fibrosis Medical Association (UKCFMA), and together we’ll continue to review the situation so that our community gets the best advice. We speak to the UKCFMA every week about how we can work together to provide high quality information and review potential issues which may affect the community.

The UK CF Registry is monitoring UK incidents of COVID-19 and reports on them fortnightly. So far incidents have been low – but there is no room for complacency. The Registry has also been a key player in the monitoring of global CF-related cases, and we’ll be able to update you later in the autumn on the most recent figures.

Behind the scenes we have also been working with governments and health bodies across the UK to ensure that the needs of people with CF are considered as policies are being developed. Every two weeks, we join other charities on a call with the Deputy Chief Medical Officers, Professor Jonathan Van-Tam or Dr Jenny Harries OBE, so that we can raise the issues you tell us about via our helpline and social media queries.

We also continue to closely monitor activity in the House of Commons, Senedd, Stormont, and Holyrood, to ensure that we can share the most relevant information with you.

Keeping CF on the agenda, we have provided evidence about our community’s experience of COVID-19 to the Treasury Select Committee, Food and Environmental Affairs Committee, Health and Social Care Committee, and the Work and Pensions Committee. Standing with other charities, we are also working as part of a coalition to call on the government to ensure that people with CF can start, and stay, in safe employment and that there is financial support available where this isn't possible.

COVID-19 continues to challenge us as a community and indeed as a country, its full impact yet to be fully realised and its end date still unclear. One thing we can say with full confidence is that the Cystic Fibrosis Trust will continue to stand with the CF community through this current adversity, as we look forward to better days to come.  

If you have any concerns around COVID-19, check out our coronavirus hub for information, or contact our Helpline.