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 live with the pandemic.
With so many unknowns it has been important to understand your challenges and experiences over time to shape and adjust services that you need as the effects of the pandemic and shielding unfold.
UK CLL Forum haematologists and researchers are studying the impact of COVID-19 infection in CLL patients who have been diagnosed in the hospital setting or admitted with infection. That is the clinical part of the study and survey collected by clinicians to give insights that will enable doctors to better understand predispositions and risks for individual patients.
To complement the clinical survey Leukaemia Care and CLL Support created a series of similar less clinical surveys that have explored the experience of CLL patients shielding in the community. This is primarily to obtain a much fuller picture of the spectrum of impact the pandemic is having on the lives of patients over time.
The first survey was launched on 27th March and was designed to elicit early responses at the beginning of shielding to discover gaps in support and information. The second survey, approximately one month later, included new questions to discover how patients were managing. The third version of this survey was designed to look further into the psychological challenges for patients at this time, as well as measuring the impact of long term shielding on quality of life and changes to attitudes to shielding over time.
Analysis has been conducted by CLL Support, the UK CLL forum and Leukaemia Care. A statistician from Swansea University has compiled data from the first two surveys, and will be comparing the journeys of patients who have answered all three surveys.
A timeline of events
When reading this survey blog, we felt it would be useful to create a timeline of events for context about when Government announcements were made and when surveys were launched. This will help to guide understanding of the survey results.
Who has been answering our surveys?
UK patients living with a CLL/SLL diagnosis. Across the three surveys, we’ve received 2,762 responses (844 survey 1, 842 survey 2, 1,076 survey 3).
This interim summary focuses on results of survey 3 and change over time from survey 2.
Summary of the findings of the third survey
- This patient population are well-educated on shielding but many are unable to shield strictly
- Restrictions and barriers to shielding are either mental, emotional or practical
- Patients feel that the NHS are doing a good job (in terms of their ongoing CLL care and/or treatment)
- There has been an overall reduction in patients level of worry about the outbreak
- There has been a slight reduction in patients who are worrying about their own health at this moment in time
- Despite these reductions in worries, approximately 1 in 10 patients are expressing a wish and need for access to psychological support to cope with shielding and the impact of the pandemic.
- Government guidance for patients shielding in England was relaxed slightly on the 1st of June to allow English patients to leave the house for exercise.
- Government guidance for those shielding is set to be reviewed on the 15th June 2020.
- Should there be further changes, patients will be contacted by letter, text or email
- We propose to continue monitoring patients physical, emotional and psychological well being as changes are made
Survey 3 data and analysis by question
We’ve broken down the survey by topic which you can read through by clicking the sections below
By survey 3, 90.2% of patients had received some sort of guidance that they should shield.
This is a big improvement from survey 1, where just 44% of patients had received this information and a further improvement on the 78% from survey 2.
Across all three surveys, over 90% of patients have told us they are actively shielding.
Beginning to shield
From the above chart, we see a large spike in patients isolating around the 23rd March 2020 which was the day the Prime Minister asked the nation to stay at home. However, we also see peaks of people beginning to isolate from earlier than this date.
We know that around 15th March 2020, the Health Secretary indicated that the over 70’s and clinically vulnerable would be contacted in ‘the coming days’ to advise them to stay at home and around this time, we see smaller spikes in people choosing to shield in anticipation of this advice.
It’s also interesting to note that there were also numbers of people isolating towards the latter part of February and earlier in March. Do we assume that patients who had been following the international spread of coronavirus had chosen to take earlier action to protect themselves?
Although we have these earlier peaks, we can also see smaller numbers of people who chose to shield long after these dates. Could these possibly be those who were late in receiving their shielding guidance from the Government?
Feeling informed about shielding
Our survey has shown that over time, patients are feeling less informed about shielding. In the second survey, 86.2% of patients rated their understanding of shielding as an 8 or above yet by survey three this had dropped to 73%. Could this be a result of Government changes in messaging?
Access to food and medications
Over the three surveys, there has been an improving pictures in terms of delivery access to food and medications with now less than 3% of patients unable to acess deliveries of these items.
Patients are increasingly relying on friends and family to help them access essential items. Local council support has seemingly increased by Survey 3 and Government help doubled between the two surveys.
Supermarket delivery availability also appears to have improved with 52% of patients now being able to access support from a supermarket, an increase of 28% since survey 2. This could be reflective of collective efforts of supermarkets to recruit and open more delivery slots across the UK.
Who are you shielding with?
Across all three surveys, results have remained consistent.
Approximately half of all CLL patients are shielding with just one other person, while around 1 in 5 are living alone. Smaller numbers are living in larger household groups
Just over 50% of people living with CLL patients are leaving the house – and this number has not significantly changed from survey 2.
At the time this survey was being conducted, Government changes included allowing non-shielding members of the public to meet up with one other person at a distance of 2 metres in a public place. They had also encouraged everyone to return to work. Despite these changes, they seemingly had little effect on CLL patients ability to shield.
Are CLL patients leaving the boundaries of their house?
Survey 2 revealed that 53.4% of patients were leaving the house for any reason but by survey 3, this had increased to 67.9% with just a third of patients having not left the house yet.
This increase in movement of CLL patients was before shielding guidance for patients was changed to encourage leaving the house once per day, so this could suggest that as time has gone on, CLL patients have found it increasingly difficult to shield to the absolutes of the guidance.
There are varied reasons for leaving the house but exercise continues to be the main reason. Despite just 3% of patients being unable to access deliveries of food and medicines, 8.9% are now leaving the house to go shopping for essentials.
Changes in decisions to shield
Of those who have shared their reasons for leaving the home, the main reason was because a healthcare professional (haematologist or GP) had told them that they were not at risk. After this, key reasons included the need to exercise, changes to Government guidance and mental health concerns.
Contact with your CLL care team
As ‘lockdown’ has continued, contact with CLL care teams has increased. In survey 2, 36.6% of patients had contact but this had increased to 55.1% when survey 3 was conducted.
Concerns about the shielding process
Patients have shared many concerns about the shielding process and we’ve summarised the key themes which are:
- Some patients feel they have fallen through gaps in the system financially
- Lots of patients struggling mentally with the idea of shielding and in some cases, people feel it is becoming harder as time goes on
- Concerns about how long shielding may well continue for (beyond 30th June)
- Problems accessing medication
- Loneliness a growing issue amongst this group
- Worries about ongoing support once rest of country ‘opens up’
A small number of patients have indicated that they have had symptoms which were suggestive of Coronavirus, however, this number has not substantially increased across the three surveys.
Patients have told us these symptoms occurred over a wide range of dates. While the November date may appear to be an error, there has been much discussion online and even in some media articles speculating that coronavirus may have been in the UK earlier than first thought.
It’s also interesting to note that there is a cluster of people who believe they had the symptoms in May – long after shielding guidance began. Does this mean they contracted symptoms after leaving the house – or from somebody they are living with?
Patients with symptoms contacted their GP first – and this is something which has remained the same from survey 2.
A very small number of patients have had a coronavirus swab taken, and an even smaller number have tested positive.
Fewer than 5% of CLL patients have been living with somebody who had symptoms indicative of coronavirus.
Government guidelines and messaging
1 in 4 patients do not understand what is meant by ‘Stay alert’, 1 in 4 do not understand what ‘Control the virus’ means and the Government message is seemingly not clear across patients.
Over half of all patients preferred the previous slogan, ‘Stay home, protect the NHS, Save Lives’
Just one in three patients has read the Government COVID19 strategy document and the release of the strategy has not helped patients to feel more reassured.
The guidance document states that there would be ongoing help to support those shielding so we asked patients what help they would need to see:
Continued support to access shopping and essential items, priority for COVID-19 vaccines and access to home testing kits were high on the priorities. It is also important to note that a quarter of all respondents wanted the possibility of having blood tests taken at home rather than needing to leave the house, indicative of anxieties about presenting to have these tests done.
Recent Government announcements have had an effect on CLL patients, with 1 in 10 now having a changed view on continued shielding.
Despite this, the overall picture is one of patients who want to continue to shield:
We asked for patients overall thoughts on continued shielding, and these were the key themes:
- Reduction of quality of life has changed viewpoint
- Financial constraints
- Can’t do it for any longer/much beyond the 30th June – impact on mental health
- Lack of confidence in Government strategy
- Others no longer taking it seriously
Your CLL appointments
Almost 60% of patients answering survey 3 were on ‘Watch and wait’
And just 1 in 5 patients are currently undergoing treatment for their CLL
We also asked patients that were post-treatment, how long it was since they were treated
Just under 8% of patients were not having regular appointments prior to the pandemic
Of patients who were due to have an appointment during the pandemic:
Just under 1 in 10 patients have seen their appointments continue as normal. A further 1 in 10 have had a delayed or moved appointment. A smaller number have seen their appointment cancelled, and an even smaller number of patients had chosen to cancel their own appointments. For those who have had a change to appointment, 40% saw the appointment conducted by telephone or video chat.
Letter was the most common way that patients found out about appointment changes. Just under 2% of patients proactively contacted their CLL team to find out about changes.
Formats of appointments have been affected by the outbreak. Telephone conversations have been the main way that appointments have been conducted. It’s interesting to note that just 1.1% of appointments had been conducted by video link – especially at a time when worldwide use of videoconference technology has grown because of the global situation. Is this indicative of issues in accessing this type of technology – either by patients or healthcare professionals?
1 in 10 patients have been told already to expect changes to their treatment which they were due to start within the next three months, and for some patients, treatment has been suspended.
Where treatment has been delayed, 52% of patients have not been informed when treatment will start again. 1 in 3 patients are being told to expect a change to the treatment type they will receive. Just over 10% are being told there is a change to where they will receive their treatment, and nearly 7% of patients have been told of a delay but already know when treatment will resume. 87.6% of patients have either had delayed or changed treatments.
Over 40% of patients are using charities or patients groups/forums to access information about changes to treatment. 1 in 3 are receiving communication from their haematologist, and just under 20% are using the NHS/Government websites. 1 in 10 patients have been in contact with their GP. Smaller numbers are using other medical websites, other healthcare professionals (such as a CNS) or are using other websites (typically googling the questions)
We asked patients for their overall thoughts to treatment changes and the theme of the responses included:
- Worries about whether patients will have their next appointment
- Lack of communication re appointments
- Concerns about immunoglobulin therapy
- Access to blood tests
- Worries about travel to hospital
We discovered that just under a quarter of patients hadn’t received a seasonal vaccine within the last six months. This has increased but as time progresses as we conduct these surveys, it is likely that patients will have received a flu vaccine but it is longer than 6 months ago.
We asked about other health conditions of CLL patients. There were hundreds of responses but we have shown a representation of conditions which are associated outcomes for patients who contract COVID-19.
Small numbers of patients in this survey normally received immunoglobulin therapy.
Access to this therapy is a challenge for half of patients
Just one in three patients have antibiotics at home.
75.2% of patients feel very supported by the healthcare system including their own CLL care team (scores of 6 or above)
Employment and finances
Before the pandemic, the majority of patients were retired and this was somewhat predictable given the typical older average age of diagnosis
1 in 10 patients have seen a change to their employment status because of coronavirus. The most common change was a patient being furloughed. In survey 2, 57% of patients who had seen their work affected had been furloughed, yet by survey three this had decreased to 33%.
41% indicated ‘Retired’ but it is unclear as to whether they had retired as result of the pandemic, or were simply informing us that they were indeed a retired patient. Just under 1 in 10 are unable to work due to shielding as they cannot do their job from home. Smaller numbers have lost their job because of the pandemic or have seen a reduction in work because they are self-employed.
Of patients still working, just 1.7% are leaving the home.
Just over half of patients have said their income hasn’t been affected by the pandemic. Just over 1 in 10 have indicated that their costs have increased, but the same also indicated that costs had decreased.
Increased costs have been attributed to a rise in utilities such as gas, electricity or water and this would be impacted by the number of people in the house every day because of shielding. Patients have indicated that food costs have increased and the reasons for this include a lack of choice now they are relying on others, or other services, to receive their groceries. A small number of patients (0.4%) told us that they were renting a second property as the person they were living with was a health care professional and they felt they could not effectively shield at home with them. Just under 1 in 10 have seen an increase in those living with them, and therefore costs have increased.
Costs have also decreased for patients. Reasons for this include the inability to go on holiday (just under 1 in 5 patients), fewer opportunities to spend spontaneously and the reduced use of vehicles or travel.
How you’re coping mentally
In this survey, we thought it was key to ask questions about how you are coping mentally with the ongoing challenges of shielding and therefore, these are new questions.
Just over 15% of patients said they were not coping well due to ongoing shielding.
Patients are using a wide range of distractions and outlets to help them cope emotionally and mentally. Work is the least important to this group, but support from those you are in the home shielding with and regular contact with friends and family were the most important. Most patients were engaging with a wide range of activities to help them cope.
7.4% of patients have already sought support with their mental health. The majority of patients at this time do not feel they need this help, but just over 10% plan to access this help in the future. Therefore, just under 1 in 5 patients in accessing or planning to access mental health support because of the pandemic.
Your worries during this pandemic
There were a number of questions in this section which were in both survey 2 and survey 3, so we are able to compare.
Green bar charts are from survey 2, while blue charts are from survey 3.
In survey 2, patients rating their concern as an 8 or above totalled 79.3%. In survey 3, patients rated their concern as an 8 or above totally 69.9% so there is a 10% reduction in concern amongst CLL patients about coronavirus. This may be due to the fact they feel they understand the virus better now, or that they feel that their concerns have been addressed over time.
Your own health
In survey 2, patients rating their concern as an 8 or above totalled 51.1%. In survey 3, patients rated their concern as an 8 or above totalled 48.5%, thus far there has not been significant changes in how worried people feel about their own health.
In survey 2, patients rating their concern as an 8 or above totalled 39.2%. In survey 3, patients rated their concern as an 8 or above totalled 31.6%. This reflects a reduction in worries about CLL treatment and well being and may be indicative of the increased contact patients have received from their own CLL care teams, and therefore this has been reassuring.
Concerns for partners/those shielding with you
In survey 3, the question was changed slightly and split into two, as represented above. The findings show an ongoing high level of worry for partners or those shielding, but less worry about how partners are coping.
Worries for those outside the household
In survey 2, patients rating their concern as an 8 or above totalled 57.1%. In survey 3, patients rated their concern as an 8 or above totalled 49%. This reflects a reduction in worries about others – could this be reflective of the change in Government guidance which is leading to people feeling more reassured about others? It also could reflect the lowering numbers of infections in the community.
With most patients in this survey classifying themselves as retired, it is no surprise that there are very low levels of worry about work prospects. Interestingly, for those who were extremely worried, this worry has also reduced. Could this be reflective of the extension of the national furlough scheme and other support mechanisms put in place for the self-employed or business owners?
Your families work prospects
Visually, the graphs look very alike in shape and the results are very much the same too. Extreme worries (10) about family work prospects have reduced slightly and have become more moderate (8) but it is clear that patients are more worried about the prospects of their loved ones than their own.
There are low levels of concerns from patients about their own financial affairs and they believe they will be largely unaffected. The group which was most concerned has reduced by over half. This could be reflective of changes in Government support packages.
Access to CLL medications
There are low, and decreasing anxieties about accessing CLL medications. This could be indicative in the low numbers of patients who are unable to access support in collecting prescriptions. CLL patients may have also been supplied with more medication because of the situation.
Accessing other medication
Once again, there are low, and decreasing anxieties about accessing other medications. This could be indicative in the low numbers of patients who are unable to access support in collecting prescriptions. Patients may have also been supplied with more medication because of the situation.
Our findings earlier in this version of this survey indicated that very small numbers of patients are struggling to access support in getting food and prescription deliveries and this change has been reflected in these charts with patients’ worries having massively reduced. Those who were the most anxious have reduced by two thirds in survey 3.
Trouble sleeping at night
There is a tiny increase in those having trouble sleeping at night but the increase of 0.3% does not seem significant at this time. Trouble sleeping at night however is consistently high, and this would correlate with a new study released by King’s College London which showed that two thirds of the public are experiencing some negative impact on their sleep due to the pandemic.
Where are CLL patients getting their information?
CLL patients are getting their information from a wide range of sources
Finally, we asked what else we could do as charities/support organisations to help during this time.
Key themes in your answers included:
- Patients are concerned about the potential length of time for shielding and would like more information about how the risks have been calculated and what groups may be asked to shield for longer
- Patients love the webinars – and there is scope to widen the topics. Suggestions below include information on managing emotions or information on exercising
- Vaccine is high on the information priorities – what type of vaccine will it be? Will it be suitable for CLL patients? Will vulnerable people be prioritised for a vaccine of this type?
- Patients would like to see information about those with CLL who have contracted covid-19: did they survive, what was the outcome, can they have a first person story from them?
- Some patients feel charities should be applying pressure to the Government to better address those who are clinically vulnerable and continuing to shield
- Financial support for patients – where can they access information to show employers?