This report offers a snapshot view of stem cell transplant patients' experience of treatment and care in the context of the COVID-19 pandemic, sharing the results of a survey undertaken with patients by Anthony Nolan.
Stem cell transplant patients and their families have been some of the most significantly affected groups during the pandemic, with many being asked to shield. The findings highlight the needs of patients at this time, particularly around emotional support, while raising important areas for the NHS consider as the ‘new normal’ begins to take shape to ensure that changes are patient-led:
- Outpatient appointments are an important part of care for patients. With the move to remote appointments, evaluation is needed to ensure that patients are still able to access all the care they need.
- This evaluation will also be important to strike the right balance between patients who can continue having remote appointments and those who need to be seen face-to-face for examination. It is especially important that safeguards are in place to ensure that patients who are unable to or are not comfortable engaging digitally can access care.
- 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.
- 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.
- Furthermore, clear, consistent and timely communication from Government can help improve patients’ emotional wellbeing and mental health, as well as assist healthcare professionals and charities to provide the best possible advice to these patients about the level of risk they face returning to ‘normal’.
- To address this, there should be specific standards for Government and the NHS relating to patient communication, information and support to ensure that there are contact-points for patients on an on-going basis.
- It is essential that patients are at the heart of the future health and care system going forward. As the ‘new normal’ develops, and changes are embedded in the NHS, this must take into account patient views and the patient perspective, including the circumstances of a diverse range of patients. This is essential to avoid the implementation of changes which may work for the healthcare system or individual Trusts, but not for the patient.