UK CLL Forum CLL/SLL and COVID-19 patient experience survey findings from surveys 1 and 2.

We've been working collaboratively to capture the experience of CLL patients who are shielding

Since the UK went into lockdown on March 23rd, The UK CLL Forum in collaboration with patient charities: CLL Support and Leukaemia Care have been collecting information from CLL patients and their families as they shield themselves to avoid infection during the pandemic. 

With so many unknowns it has been important to collect and understand your challenges and experiences through surveys to shape and deliver services that you need at this critical time.  

The first survey fielded on the 25th of March 2020 was designed to understand patient experience at the beginning of the shielding to discover gaps in support and information. The second survey fielded on the 20th of April 2020, approximately one month later, included new questions to discover how patients were managing. CLL patients were invited to respond to the survey via emails from the two charities and newsletters over a two-week period. The results of the survey were analysed by a statistician at Swansea University. 

We are now asking you to complete our third CLL/SLL survey in this series, this survey explores the impact of long term and continuing shielding on your quality of life, ability to continue to shield yourself and your psychological health. You can find the details here. This survey will close in the next week and inform a report on our findings. 

We recognise the effort it can take to fill in a long survey, so in this blog we’d like to give a brief update on what we have found across our first two surveys. We’ve also produced some infographics which contain these snapshots for quick explanation – perhaps you’d like to share them with others who are interested? 

Who has been answering our surveys?

UK patients living with a CLL/SLL diagnosis. Across the two initial surveys, we’ve received 1686 responses (844 survey 1, 842 survey 2). Because of your co-operation with these surveys, we’ve been able to track the experiences of 376 patients across the two initial surveys and we hope this will extend to the third survey too. We’ve done this so we can create a picture over time of the changing thoughts and feelings of CLL patients. 

The average age of those answering our surveys is 64.7 years old – our youngest respondent so far has been 31 and our oldest was 88. 

Across the two surveys, 57% of those who responded were ‘Watch and Wait’ patients. Other respondents were fairly evenly split between those on active treatment and those who were post-treatment. 

Shielding

We were disappointed that at the point survey 1 was completed, just 44% of patients had received a shielding letter but this rapidly improved by survey 2 with 78% of people saying they had received guidance. 

For those patients who had not received letters, we then contacted them with details of how they could get their shielding letter or indeed be added onto the clinically vulnerable list which would then enable them to access Government support with food parcels or medication deliveries. 

Although all CLL patients hadn’t received guidance to shield at the time of the first two surveys, 90% of those surveys said they were indeed shielding and this number remained steady across the two surveys. 

CLL patients feel their knowledge of shielding and how to shield is good and just a handful of patients felt their knowledge of shielding was poor. 

1 in 5 CLL patients, according to our survey, are living alone. Around half live with just one other person, while 30% live with more than one other. 

To follow shielding to the letter, patients should not be leaving the home (or garden). However, survey two revealed that 53.4% of patients who are shielding are leaving the home or garden and the reasons for doing this included the need to exercise, blood tests or other medical appointments. Some CLL patients have caring responsibilities for other adults outside the home. Some are walking their dogs or have other responsibilities which involve caring for animals. A number of CLL patients are leaving the home to go to work. Some patients are simply enjoying some gardening.   

55% of people living with CLL patients are leaving the home too. 

The revelation of numbers of patients who have been leaving the home during shielding is concerning. With current changes and relaxation of some lockdown measures we will continue to monitor this closely frin Survey 3 responses to explore changes to behaviour and what support is required for patients to effectively mitigate risks.

By the time our second survey concluded, almost 68% of patients reported that they had registered themselves as clinically vulnerable on the Government website. Charities and clinicians had been working hard up until that point to make this service known to patients and to encourage registration. 

Food and prescription medicine deliveries have been a hot topic and we were very worried that 20% of patients in our first survey were unable to access these services. Thankfully, this had decreased to just 6% by the second survey.

People are accessing support from a number of avenues. The biggest provider of support are friends and family. Voluntary groups and local charities are also helping patients, and 1 in 10 are relying on Government help following registering as a vulnerable person on their website. Smaller numbers are now relying on neighbours that they previously did not know. 

Your CLL appointments

Disruption to routine appointments grew between the two surveys. Disruption could mean a change to an appointments format from an in-person meeting to a telephone or video appointment. For some, it has meant delays to appointments. Some patients reported that they had chosen to cancel their appointments. 

Patients reported that they found out that their appointment was changing in a number of ways. The most common way to find out was via letter or text from the hospital. Some patients were informed at previous appointments that there would be disruption. 

Treatment has also been disrupted as a result of COVID-19. Some have been told that their treatment type will now change. Some have been informed of a delay to starting treatment and as of the day of answering the second survey, they still did not know when their treatment would begin. 

We are keen to continue to monitor changes to care and treatment to understand long term implications  

Employment, finances and the pandemic

CLL is a cancer which affects mainly older people so it came as no surprise that 57% of people answering our surveys were retired prior to this event. However, 1 in 5 patients were still working full time and 1 in 10 part time so across the full patient population, this is not an insignificant number. 

Of those who were still employed, 54% have been furloughed. With the furlough scheme changing after July, it will be interesting to see if this has changed at all in survey three. A small number of self-employed patients also informed us that they are currently not working due to a decrease in work during this time. 

We asked patients about their costs during this pandemic, and overwhelmingly, people who had seen an increase in costs attributed it to spending on food. In some instances, this was because they felt the cost of food had risen or because of a lack of choice due to shielding, this had increased the grocery bills. For some, an increased number of people in the house had seen bills increase, for example, where children had returned to the family home. Some patients are financially supporting other members of the family who have been negatively impacted by the virus. Reduction in rental incomes and reduced interest rates were all contributing factors to a decrease in income too. 

Summary and discussion

The picture created across both surveys seems to be of improving information dissemination and access to support by patients. But this was somewhat tempered by an increasing level of concern in survey 2 across all ages as shielding continued. Current changes to lock down government guidance and methods to manage the pandemic are likely to increase uncertainty and concern.

The next steps:

  •   explore the impact of long term and continued shielding, the ability to continue shield on quality of life and the psychological health of patients.  
  •   publish a full report of 3rd survey findings to direct initiatives and the development of resources to provide appropriate support and care.

 

Thank you for the ongoing support and commitment  

 

 

 

 

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