Written Evidence Submitted by Blood Cancer UK

(CLL0048)

About Our Survey

In March 2020, COVID-19 spread quickly across the UK. Despite their vulnerability to the virus, at the start of the pandemic there was very little information or support available for people with blood cancer on COVID-19. As such, we performed a survey to better understand the impact the pandemic was having on the blood cancer community; to gather the patient perspective; to inform our information, support, and policy work; and to inform the work of others such as clinicians, the NHS, and Government.

Although not intended to be an academic survey, the questionnaire was extensive, covering major concerns; NHS shielding letters; the impact of COVID-19 on treatment, care, and mental health; information and support needs; and an ‘about you’ section on the respondent. The survey also provided numerous free-text sections allowing respondents to expand on their answers and provide additional insight.

As of mid-July, the survey received 6,417 responses: 58% have blood cancer; 23% are in remission from blood cancer; and 19% are a friend, family member, or carer of someone with the disease. The survey received responses from across the blood cancer community: data on gender, age, geographical location, type of blood cancer, and stage of treatment (e.g. receiving treatment, living with a chronic blood cancer, Watch and Wait, etc.) was collected. This response rate combined with the level of detail we collected on respondents means we can analyse our data in a large number of ways and the ability to ask nuanced questions. This report presents a number of our headline findings.

Methodology | Our survey was launched in late March 2020, coinciding approximately with the initial lockdown restrictions and the announcement that the Prime Minister and Health Secretary had tested positive for COVID-19. We shared the survey via our channels (including our social media accounts and newsletters) and it was promoted by several other organisations. With announcements made regarding the easing of the lockdown (4 July) and the eventual end of shielding (31 July), the survey was expanded in late June to further explore the impact of COVID-19 on mental health and blood cancer medical appointments, and to determine the patient perspective of shielding and the lockdown. As the survey remained open for several months, we were able to monitor changing trends. This report examines data collected between 27 March and 13 July 2020.

Acknowledgements | Dr Ross P. Coron (Policy, Campaigns, & Engagement Team) performed our COVID-19 survey, analysed the results, and produced this report.

Fear and Uncertainty

The major theme throughout our survey was fear and uncertainty in the blood cancer community. This is understandable: COVID-19 is a new disease and therefore poorly understood; the Government’s policies on the pandemic change regularly and are often poorly communicated; and individuals with blood cancer are more vulnerable to the disease than patients with other types of cancer.

We asked people affected by blood cancer what their major fears were about the pandemic. Throughout the duration of the survey, the respondents’ major concern was their risk of contracting the virus. Other major fears included managing social distancing and shielding, and the impact of COVID-19 on their mental health, treatment, and hospital appointments.

We added additional response options to our survey (particularly on the easing of the lockdown and the potential end to shielding) in late June to reflect changing Government guidance. Accordingly, a second wave of COVID-19 became a major concern for the blood cancer community as did the easing of the lockdown and the eventual end to shielding (see Table 1 below).

Our survey highlighted that some concerns became more or less pronounced over time: concern over the impact of COVID-19 on treatment or care for example dropped from 25% in May to 15% in June, and fear over the capacity of the NHS to deal with the pandemic changed from being respondents’ second largest concern in March to their eleventh in June.

Impact On… Mental Health

Many people with cancer experience issues with their mental health. We know that there can be particular mental health challenges for those with blood cancer – primarily due to the manner in which blood cancer is diagnosed and treated.

Our survey highlighted a profound mental health impact of COVID-19 on the blood cancer community. In total 87% of respondents said their mental health had been impacted in some form by the pandemic – 10% of respondents told us that this impact had been severe. Perhaps somewhat surprisingly, this impact remained relatively consistent week to week throughout the duration of the survey.

Respondents told us that the pandemic was making them feel anxious (67%), fearful (46%), low in mood (45%), stressed (36%), and lonely / isolated (32%). In terms of the impact on their day-to-day lives, respondents told us it was affecting their ability to enjoy life (59%), their stress / anxiety levels (58%), hopes for the future (52%), ability to carry out daily activities (48%), and happiness (41%).

Our survey also told us that 11% of respondents had been accessing professional support for their mental health prior to the pandemic. Worryingly, despite an increased need for mental health support, 32% of these respondents reported having lost access to this support. We do not yet understand the reason for this.

While important, we know that shielding from other people (in particular friends and family members) was deeply challenging for the vulnerable community. Our survey highlighted that many in this category sought mental health support due to the difficulties associated with the measure. 14% of shielders had spoken to their friends and family members about their mental health struggles, while 4% and 3% of respondents had contacted their GP or a mental health professional respectively during the pandemic regarding their mental health. The latter two percentages are surprisingly low and perhaps a reflection of patients’ desire to avoid overburdening the healthcare system during the pandemic.

While 11% of respondents had been accessing mental health support prior to the pandemic, our data indicates that approximately 30% of shielders may seek mental health support in the future. This is deeply concerning considering the reports of individuals losing access to support during the pandemic.

Our Recommendations:

• Work should be undertaken to identify the reasons some individuals lost access to mental health support during the pandemic. This support must resume as a matter of priority.
• We expect the rise in demand for mental health support to continue. The NHS and UK Governments must be ready to meet this increased demand and proactive support should be introduced, particularly for the clinically extremely vulnerable / shielding populations.
• At particular risk of COVID-19, additional research should be performed to assess the mental health impact of COVID-19 on the blood cancer community.

Impact on… Treatment and Care

When COVID-19 spread across the country the NHS rightly reconfigured its services to deal with the pandemic. These measures involved the building of the NHS Nightingale Hospitals; the reallocation of NHS staff; splitting hospitals into ‘green’ and ‘red’ zones; and changes to NICE guidance to allow for greater flexibility in cancer management. While these efforts prevented the NHS becoming overwhelmed as first feared, unsurprisingly these changes affected the treatment and care of patients.

47% of respondents reported that their blood cancer appointments and treatment had been impacted in some manner by the pandemic. We have reason to believe that the true percentage is actually higher: many respondents told us that their next appointment had not been scheduled and as such, hadn’t been affected yet.

While some respondents reported having their appointments cancelled or delayed, many others had their face-to-face consultations swapped to a telephone conversation. A number of respondents also reported having their treatment altered such as their blood tests postponed, while others informed us of a pause or early termination to their chemotherapy.

Our survey told us that while 52% of those with scheduled care had been attending their appointments during the COVID-19 pandemic, 45% had not due to disruptions outside of their control e.g. due to appointment cancellations or postponement. Worrying, 7% of those with scheduled care had not been attending their appointments out of choice, typically due to concerns over visiting a hospital in the midst of a pandemic.

When these individuals were asked what would give them the confidence to attend their appointments again, respondents said they would be comforted by more information about the safety measures in place (27%) or by more reassurance from their treating team (13%). Strikingly, 47% said nothing would give them the confidence to visit a hospital during the current pandemic. This figure points to the extreme anxiety of many in the blood cancer community; the efficacy of the Government’s messaging in instructing people to ‘Stay Home. Protect the NHS. Save Lives’; and the difficulty we are likely to face in reassuring patients that hospitals are both open and safe.

Our Recommendations:

• The Government’s message in March 2020 of ‘Stay at Home. Protect the NHS. Save Lives’ was effective. This message however resulted in some putting their health needs secondary to that of the health service, and to avoid seeking help even when necessary. As cases begin to rise again, we are pleased to see that the UK Governments are making efforts to encourage people to visit their healthcare professionals (e.g. NHS England’s Help Us Help You campaign).
• Accordingly, the NHS and hospitals must take appropriate measures to protect vulnerable patients from COVID-19 and to communicate their efforts clearly to create confidence. Regular testing of NHS staff, even those with no symptoms, will be important in this regard.
• Work to understand the impact of COVID-19 on blood cancer treatment and care (e.g. changes to chemotherapy and stem cell transplantation) must continue and acted upon to restore disrupted services.
• We have seen rapid change and innovation across the healthcare system such as the adoption of online consultations, greater flexibility in the management of cancer, and additional treatment options. The efficacy of these measures should be reviewed and retained if beneficial.

Impact on… Carers

We know from our previous work that carers are also affected by the impact of blood cancer and often experience their own unique practical and emotional challenges. 

Over one thousand people (i.e. 19%) that responded to our survey identified themselves as a carer. These respondents fell into a range of categories but were predominantly partners (48%), parents (25%), and other family members (15%) of an individual with blood cancer.

Mental Health | We were interested in capturing the unique mental health challenges faced by these carers during the COVID-19 pandemic. For those living in a different household, carers told us how difficult it was not seeing their loved one. For those residing in the same household, many carers told us how challenging it was living together but physically separated, and about their fears of infecting their vulnerable loved one with the virus.

91% of carers felt their mental health had been affected by the COVID-19 pandemic. Strikingly, 16% of these carers described this impact as ‘severe’ – six percentage points higher than people with blood cancer. Further to this, 73% of carers told us that supporting their loved one with blood cancer through the pandemic had caused them additional stress.

Views on Shielding | 72% of carers told us they were living in the same household as someone with blood cancer through the pandemic. 87% of these respondents considered themselves to be shielding with their vulnerable loved one. These carers told us that this had impacted their lives in a number of ways, such as negatively affecting their mental health and wellbeing, their work (27%), their finances (22%), and their relationship with the person affected by blood cancer (13%).

Attitudes Towards Shielding

Shielding Letters | In March 2020, the four UK Governments introduced ‘shielding’ – a series of measures to protect those at very high risk of severe illness from COVID-19 by minimising their interactions with other people. Over two million people in the UK were advised to shield – a group including ~200,000 people with blood cancer. Shielding not only protected vulnerable people but made them eligible for shielding support from the Government such as food and medicine deliveries, and financial benefits.

Those identified as being at high risk from COVID-19 were advised to shield by the NHS. We asked survey respondents with blood cancer if they had received such a letter or text instructing them to take this action. Across the duration of the survey 57% of respondents told us yes and that they had been expecting such a notification, and 9% said yes but that they hadn’t expected one. Conversely, 24% of respondents told us that they had not received a letter despite expecting one. Our data indicates that this situation slowly improved over time: in early March, 38% of respondents had received a letter vs. 58% who had not, compared with June in which 82% of respondents had received a letter vs. 13% who had not. However, these figures remain a cause for concern, indicating that potentially thousands of highly vulnerable people did not receive instructions to shield as the pandemic spread across the country, and that many were still waiting to receive advice after the shielding programme formally ended.

Shielding | Despite persistent issues with the NHS shielding letters, our survey told us that members of the blood cancer community were diligently shielding, with 46% of respondents following guidance ‘very strictly’ (e.g. not leaving the house at all) and 52% following the guidance ‘quite strictly’ (e.g. leave the house as little as possible) i.e. 98% adherence. Answers to our open text questions on the topic indicated that people deviating from the shielding guidance were primarily doing so for unavoidable reasons or to cautiously exercise far away from other people.

We also asked shielders how long they could stand to continue shielding for. While 47% said they could shield for up to an additional six months, 30% said they could stand to shield for another six to 12 months. Considering the level of shielding adherence and concern over the easing of the lockdown, it is perhaps unsurprising that 22% of respondents said they would be willing to shield indefinitely to protect their health.

Easing of the Lockdown | In July 2020, the UK Governments announced an easing of the lockdown. We found that 65% of respondents understood the guidance compared with 31% who partially understood it and 4% who did not. Changes to lockdown guidance was met with concern, with 74% of respondents worried about the easing of measures. When we asked shielders what steps they were likely to take as the lockdown eased, respondents were more likely than not to stop their children returning to school; less likely to discourage other household members from returning to work; more likely to ask friends and family members not to visit their household; less likely to socially distance from members of their own household; and more likely to not go out to work even if permitted.

Our Recommendations:

• Any changes to shielding must be communicated clearly and in advance of implementation. As a trusted voice, charities and patient organisations should be involved in any messaging to ensure future guidance is clear, aligned, and available when changes are made public.
• Considering the threat of COVID-19 and initial lack of clinical data on the virus, it was right that blanket shielding guidance was first issued. As we move forward and better-understand the virus however, a more nuanced approach should be taken (e.g. accounting for disease type and stage of treatment).
• If shielding is reintroduced, the shielding patients list must be kept up to date and continually reassessed as clinical data is published. Notifications to shield must go out in a timelier and more coordinated manner.
• The QCOVID risk prediction tool should be made available to the public for individuals to better-understand their personal risk and facilitate conversations with their clinical teams.
• To ensure consistency, efforts must be taken to improve coordination between the devolved administrations, Government departments, and central / local Government.
• Shielding support ended in July leaving many people with blood cancer faced with the choice of protecting their health or keeping their jobs. In our #SaveOurShielders campaign, we called on the Government to:
• Re-open the furlough scheme to those advised to continue shielding or where their employer could not create a COVID-free workplace.
• Ensure those diagnosed with blood cancer were promptly added to the list of shielders.
• Commit to the re-introduction of a full support package to those asked to shield again if the infection rate were to rise significantly.
• Accordingly, we were pleased with the Government’s decision in November to extend the furlough scheme until March 2021.

COVID-19 Vaccines

Our Recommendations:

• We recognise the potential of COVID-19 vaccines; commend the speed at which they have been developed; and pay tribute to all involved in their development and implementation.
• Due to their extreme vulnerability to COVID-19, we want people with blood cancer to be placed appropriately on the JCVI’s COVID-19 vaccine prioritisation list.
• We call on the evidence behind the JCVI’s prioritisation to be made public.
• If some blood cancer patients are unable to receive a COVID-19 vaccine because of clinical reasons, they should receive a communication explaining this, and their household and treating teams should be prioritised for vaccination ahead of the general public.
• As a trusted voice, patient organisations should be involved in the development and dissemination of any messaging surrounding COVID-19 vaccines.

(November 2020)