The impact on mental health and a lack of tailored support emerged in the responses to the previous survey in April. Therefore, we decided to ask a specific question on mental health and wellbeing, to gauge how stem cell transplant patients are feeling at this time.
The wording for this question was taken from the Office of National Statistics (ONS) wellbeing survey of extremely clinically vulnerable people1. This has allowed us to compare the results for stem cell transplant patients with the wider group of extremely clinically vulnerable people that the ONS spoke to.
The impact of coronavirus on patient's wellbeing
57% of respondents reported that their mental health and wellbeing has become worse or much worse as a result of the coronavirus. This is compared to 35% in the ONS group. This comparison suggests that the mental health and wellbeing of stem cell transplant patients is worse than the wider cohort. The free text comments revealed that many are struggling with their wellbeing due to the challenges of COVID-19.
I am struggling emotionally with being isolated from society again after more than 2 years of being away from society when I was having treatment and recovering from treatment.
Patient survey respondent
Stem cell transplant patients have experience of isolation, as this is often a requirement prior to and post-transplant to avoid infection. While some described this as being good preparation for shielding, for many people, it seems that being seen as vulnerable and being asked to shield can be seen as a set back from achieving ‘normality’ post-transplant. Many respondents have faced significant disruption to their lives as a result of the pandemic, with a number having to shield separately from immediate family and partners. This was, of course, having a significant impact on their wellbeing.
I am having to shield from my partner because he is going to work daily. It is very difficult to not be able to be close to the person you share your life with.
Patient survey respondent
The feeling, and fear of, being ‘left behind’ as lockdown eases and the country returns to some form of normality appeared to be very prevalent in many people’s minds. This was compounded by the long period of time without the UK Government specifically addressing the needs of shielders, followed by the swift changes to guidance. Many stem cell transplant patients believe they will not be safe to return to normal until a vaccine is in place.
It also was clear that the easing of lockdown and considering the future, such as the return to work and school, had increased the concerns of stem cell transplant patients, compounded by a lack of clarity about how families should approach this. There was a lot of concern that the behavioural change in the general population, resulting from lockdown easing, could lead to more risk and potential spikes in local COVID-19 cases which would impact the safety of those who have been shielding. The risk of catching COVID-19 following the lifting of shielding at the end of July, coupled with the possibility of a second spike or local outbreaks, was a predominant anxiety for many.
My daughter starts school in September. I’ve been told to either move out of the family home, socially distance within the home or delay her start to school if COVID numbers are still high. We’re likely to delay her start to school until my immune system is a bit better so again, worry she’s been impacted because of my illness.
Patient survey respondent
Meanwhile, vital transplants are still going ahead but patients are having to navigate changes as a result of COVID-19. This includes restrictions on visitors, which is further distancing patients from their support networks at a difficult time.
Improving mental health and wellbeing
Improving the mental health and wellbeing of stem cell transplant patients must be a top priority. All patients should have pre- and regular post-transplant assessments of their mental wellbeing. In collaboration with their key worker, they should then have the opportunity to create a personalised care plan.
Given the uncertainty around the future trajectory of the virus, there is likely to be a period of ‘start-stop-start’ as restrictions have to be eased and tightened to reflect on-the-ground circumstances. While this will be necessary for the NHS, it is likely to heighten confusion and anxiety for patients. To address this, patient communication, information and support must be integral to the NHS recovery plans and must ensure that there are contact-points for patients on an on-going basis.