Today we are launching our report, ‘Stem cell transplants and COVID-19: What have we learnt from patients during the pandemic?’. Charlotte from our Policy and Public Affairs team shares findings from the report and reflections on the needs of stem cell transplant patients, especially in the context of rising COVID-19 cases across the UK.
The COVID-19 pandemic has been a worrying time for stem cell transplant patients and their families, who have been some of the most significantly affected groups, with many initially advised to shield. At Anthony Nolan, we’re continuing to advocate for stem cell transplant patients at this difficult time, and key to doing this successfully is understanding their experiences and concerns. We are asking for patient’s views and experiences and the report launched today shares the insight we have gathered on the impact of COVID-19 on stem cell transplant patients.
With COVID-19 cases rising again across the UK, we want to share our important learnings to take into the second wave to support stem cell transplant patients.
Communication is key
Our survey found that stem cell transplant patients’ experiences of the first wave of COVID-19 highlighted lots of anxiety and stress due to poor communication from national bodies on how to keep themselves safe. As COVID-19 cases have now risen again across the UK, and the Prime Minister and Devolved Governments have revealed a raft of new measures designed to curb the rate of infection, it is vital that communication with patients is clear, consistent and timely.
Not only can better communication help improve patients’ emotional wellbeing and mental health, it can also assist healthcare professionals and charities in providing the best possible advice to these patients about the level of risk they face.
The importance of support: practical and emotional
Support for the clinically vulnerable has been wound down since shielding was paused in August and they are no longer able to access free food parcels, medicine deliveries or basic care from the National Shielding Service. Clinically vulnerable people are also no longer eligible for Statutory Sick Pay if they are unable to work, as workplaces are now deemed to be ‘COVID-secure’.
Our survey found that many stem cell transplant patients were concerned about the expectation that they return to work as normal, despite the risk posed by COVID-19. We believe that no stem cell transplant patient should be forced to choose between protecting their health and keeping their job. Patients who are advised to continue shielding by their healthcare team must continue to be supported and receive the protections they need. This includes access to food, medicines and other essential supplies, as well as strong employment rights
Emotional support is also vital, as our survey found that 57% of respondents reported that their mental health and wellbeing was worse or much worse as a result of COVID-19. It is clear that 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.
Many also believe they will not be safe to return to normal until a vaccine is in place. 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.
Treatment and care for stem cell transplant patients were initially affected due to the huge effort to reduce pressure on the NHS, but healthcare teams have been working hard over the last few months to restore those services. Accessing appointments remotely, through telephone or video consultations, has been vital to allowing care to continue during the pandemic. Going forward, remote appointments will have a lot of benefits, including reducing travel time for patients, however, evaluation will be vital to ensure that patients are still able to access all the care they need. Patients must be offered a choice on how they access care so those who are unable to or are not comfortable engaging digitally are not excluded.
It became clear through our survey that a number of patients were concerned that the impact of COVID-19 could make it less likely that they would be able to access the treatment they needed in the next few months. We know that to access treatment safely, patients must be assured that these are being delivered in a COVID-19 free environment. A recent Health and Social Care Select Committee report revealed that access to regular testing for staff is an issue across the NHS, and this will inevitably impact on stem cell transplant teams and services. We need a national staff testing programme which targets services that provide care for immunocompromised patients, otherwise we risk taking specialist teams offline, delaying urgent treatments and placing additional workload on already stretched capacity.
The future and next steps for Anthony Nolan
Given the uncertainty around the future trajectory of the pandemic, with the recent local tier system being put in place to curb the spread of the virus, there will likely be a period of ‘start-stop-start’ as restrictions are eased and tightened. While this will be necessary for the NHS and to keep patients safe, it is likely to heighten confusion and anxiety.
To address this, patient communication, information and support must continue to be integral to the NHS recovery plans to ensure that there are contact points for patients on an on-going basis.
Our report forms part of a broader programme of work that Anthony Nolan is carrying out in response to COVID-19, as we look to influence the development of the ‘new normal’ to ensure the impact of the pandemic on stem cell transplant patients’ outcomes and experience is minimised. Our next steps include:
- Capturing some of the nuances that sit behind these findings by following up with several patients to conduct in-depth qualitative telephone interviews.
- Carrying out another survey in due course to continue to represent the experience of patients as the COVID-19 situation progresses.
- Due to the lack of data on quality of life for transplant patients, we will be conducting a study of ‘Stem Cell Transplant Patient Experience’, which explores the relationship between transplant and quality of life (QoL), pre and post-transplant. This will be an important evidence resource for the NHS and commissioners to understand patient experience.
Keep an eye out for opportunities to work with us to represent the patient perspective in the future.
If you or someone you know is going through a stem cell transplant and would like some support, our Patient Services team are here for you. Visit anthonynolan.org/patients to find out more.