Reflections on a year of shielding and lockdowns

Blog - Becky Kilgariff, Head of Information, Support and Programmes -

As we mark a year since the first shielding advice was announced, Becky Kilgariff, our Head of Information, Support and Programmes, takes a moment to reflect on how the pandemic has affected people with cystic fibrosis (CF). Thanks to your incredible support, the Trust has provided information and help to the CF community throughout this difficult year. As we approach the end of another period of shielding, we recognise there may be mixed emotions including some anxiety and uncertainty so Becky also gives an update on our plans to ensure that you continue to have the support you need. 

On 11 March 2020, with concerns about the virus rising, the UK Cystic Fibrosis Medical Association (UKCFMA) released a statement advising everyone with CF to “stay at home as much as possible”.

By this point many of you were already very worried, and our Helpline and social media channels were really busy with queries. We quickly formed a COVID-19 crisis team, made up of staff from across the organisation who met daily to discuss the concerns we were hearing, identify the information you needed, and plan how we would find and share that information. The COVID-19 staff group still meets at least twice weekly – safe to say we’ve probably spent more time with each other in those meetings than we have with our friends and family members in the past year!

Ten days after the UKCFMA’s statement, the Government released the first shielding guidance… late in the evening, on a Saturday… before publishing the full guidance a few days later. Remembering those few days brings most of us at the Trust out in a cold sweat – I’m sure many affected by the shielding guidance will feel the same. Our social media channels and our Helpline have never been busier than in late March and April 2020 – one social media post alone, which explained shielding advice, had over 1,000 comments and, at the peak, our Helpline was receiving five times the usual number of enquiries.

Issues accessing food and shops

It was deeply concerning to hear from people who couldn’t get delivery slots for food and faced terrifying decisions between going without the food they needed or risking a trip to the shops. We wrote to all major supermarkets, produced template letters to help supermarkets understand that people with CF were shielding and should be able to access shopping slots reserved for vulnerable groups, and worked with corporate partners in the food industry to find alternatives to supermarkets for food deliveries.

We published detailed information on different ways to access food shopping – a need that really would have been unthinkable just a few weeks earlier. Many were hit by unexpectedly high food costs, often coupled with a loss of income, and demand for our emergency grants increased rapidly. In total this year we have provided over 700 COVID-related grants and handled a third more Helpline enquiries – many of these enquiries were about financial worries.

Shielding’s impact on health, wellbeing and daily life

We also started to hear from people who told us they felt their health beginning to decline as they couldn’t do their usual exercise – the initial shielding guidance advised people not to leave home at all. This was really worrying because shielding was designed to protect the health of those thought to be most vulnerable to the pandemic, but we could hear from you that your health was at risk as you couldn’t exercise. We very quickly scaled up our grant programme, and between April and July we provided 380 emergency grants for home exercise equipment, to ensure those who had been exercising before the pandemic could continue to do so safely at home. Many of you generously donated to our emergency appeal, which enabled us to provide this vital support.

SHARE study findings. "I'm petrified of catching it. My dad works away and hasn't been allowed to come home so no new germs are brought into the house."

One of the key challenges was that shielding advice applied to the person with CF only, but many families felt that it was essential for everyone in the household to shield, to protect the person with cystic fibrosis. We know this created a lot of uncertainty and concern and we regularly raised the need for clearer communication with politicians and the press. The shielding advice brought many individual challenges and sacrifices, and for many of you, led to difficult decisions about work. We aimed to provide as much information as we could to support your choices and offer financial support through our grants and welfare advice services.

Parliamentary action

We’ve worked hard to keep on top of all of the fast-moving developments across the UK and make sure the voices of people affected by CF are heard and understood by parliamentarians and policy-makers throughout the pandemic. We have done this through working in a coalition of charities representing people vulnerable to the pandemic, attending regular briefings from the Deputy Chief Medical Officer and the Department of Health and Social Care, and submitting evidence to a wide variety of Government consultations, as well as briefing parliamentarians across the four nations and asking them to raise these issues in Parliament. When many of you shared your worries about returning to work when shielding was paused in the summer, we, along with other charities, wrote a joint letter to the Chancellor calling for greater financial and return to work support for those shielding.

Helping manage your day-to-day life

We launched our income maximisation service just before the pandemic hit – which turned out to be very good timing. Our welfare team has provided advice to over 300 people since the start of April 2020, and on average those who have had support from our income maximisation service have seen their household incomes increase by £3,000 a year. We also worked with an expert employment lawyer to provide detailed information on your employment rights on our website – and we have continued to update this every time Government guidance has changed over the past year.

As we moved through the spring into summer, we continued to update our information and share social media updates whenever Government guidance changed, which became more challenging as the guidance was increasingly different across the four UK nations. Sometimes we were given a last-minute heads-up that something new was coming but mostly, we found out when you did.

Alongside shielding, lockdown and ever-changing Government guidance, people with CF were also dealing with changes to the way their CF care was delivered. You can read more about this, and the work of the Trust behind the scenes in the upcoming issue of our CF Life magazine, landing in April.

As the year progressed, a significant change came in late summer, when the vast majority of children and young people who had been shielding were told they wouldn’t be advised to shield again in future. This was positive news for many, but also raised new questions, and meant many families faced new decisions about ‘returning to normal’. To support your decisions, we increased the information on our website and held online CF LIVE Zoom sessions with experts providing information on topics such as returning to school, work and welfare benefits.

When virus rates rose again in the autumn, worries increased across the CF community. In November, adults with CF were advised they were ‘clinically extremely vulnerable’ and should follow shielding advice again. There were mixed feelings about this news but, overall, we knew that it at least meant people with CF shouldn’t feel forced into a workplace where they didn’t feel safe. When that shielding period ended in early December, many of you contacted us for support and information as you made decisions about returning to work. Ultimately, many felt this was an impossible decision between their health and their livelihood and there were no easy answers, but we wanted to make sure you had all the information you needed to support your choices.

What people with CF said about shielding

SHARE study findings. "My isolation has impacted my ability to find work and cut me off from my family." Psychologically overwhelming. Fearful of all contact outside the house."

This year we have collaborated with two universities on separate studies to help us understand how shielding has affected the CF community. Southampton University’s SHARE study focused on the experiences of parents and of children and young adults, and the University of Huddersfield shielding survey looked at the experiences of adults who were shielding and their family members.

The results of both surveys clearly show the impact of shielding on both physical and mental health. The SHARE study data showed that lives had been disrupted, many children and young people were exercising less, families felt more isolated, and many were worried about what would come next – how and when shielding would end and if it would be safe to resume normal activities. 

The adults with CF who took part in the Huddersfield survey reported that maintaining their usual levels of exercise was particularly challenging, as was staying positive day to day. Nearly two-thirds felt their mood was worse than usual during shielding, and many also reported difficulties accessing food.

Adults with CF also held very mixed views on whether they would follow shielding guidance again in future. The Huddersfield study collected data from 1,400 people who were shielding due to a wide range of medical conditions (92 people with CF took part) and there are some interesting comparisons in how people with CF experienced shielding compared to the wider ‘all conditions’ data – people with CF were younger, were more likely to be experiencing a worse mood than before shielding, were more likely to have experienced a reduction in their physical activity… and, interestingly, were more likely to have pets!

A separate survey on our emergency home exercise grants, which we provided when shielding guidance advised people with CF not to leave home at all, suggested that some of those who received the grants actually exercised more while shielding than they did before. It was also clear that being able to exercise at home while shielding not only helped people with CF to stay physically well but boosted their mental health too – something we can communicate to our funders to support the importance of our grants. We continue to provide exercise grants through our Health & Wellbeing grant programme and our emergency grants are there to protect the health of people with CF by funding daily essentials at times of hardship. 

The data from surveys, as well as your ongoing feedback and the issues and questions you raise on our Helpline and social media channels, have been really important in helping us to shape the information and support we provide. We have recently launched a series of online events for adults with CF, building on the success of our youth programme. We are piloting a range of activity events via Zoom and if these go well and the feedback is positive, we’ll be in a strong position to apply for funding to do more events.

The return to ‘normal’ for people with CF will be gradual

Hand holding a syringe. Text reads COVID vaccines

As we come to the one-year anniversary of UK governments first advising people with CF to shield, we have to recognise one very significant step forward for all of us – vaccinations against COVID-19. People with CF were originally placed in Group 6 of the vaccine roll-out but in November we wrote to the Chair of the JCVI and the Vaccines Minister and lobbied successfully for people who were clinically extremely vulnerable to be moved to Group 4. All adults with CF will now have been offered a vaccine, and we continue to closely monitor developments towards vaccines for children. Sadly however, we know that two people with CF have died due to COVID in the past year – our thoughts remain with their family and friends.

We all hope this lockdown can be the last, and this shielding period can be the last. But, we know that life won’t suddenly become easy and straightforward overnight – the CF community will need to rebuild their lives and recover from a pandemic that has affected us all so deeply.

Behind the scenes, we’re planning for the support you will need in the months ahead. We’re mindful that some of you will also be adjusting to what new medications mean for you. People in the CF community have been impacted socially, emotionally, physically and perhaps financially by the past 12 months, and will need new and different information and support from us as we move forward.

We are thinking about your needs in terms of welfare advice, access to employment and a sustainable financial future, and how best to ensure our grant programme can help those in most need. We’re looking at how we support you with your mental health, the ways we can create safe spaces for the community to come together, and the information you’ll need to support your choices and decisions. It’s vital our work is shaped by you and what you need, so we’re also working on new ways for you to get involved in developing our information and support.

Our Helpline team remains on hand to support you with any questions you have or any support you need. We’ve extended our opening hours and ensured the team is available to answer queries via social media. Please do get in touch if you need our support.

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