CONTINUING OUR SERIES ON COVID-19 AND THE PALLIATIVE CARE RESPONSE – AND A CHANCE TO DOWNLOAD THE LATEST COVPALL STUDY FINDINGS OPEN ACCESS…
Today’s Guest Writer is Dr Sabrina Bajwah, Clinical Senior Lecturer, King’s College London and Honorary Palliative Care Consultant at King’s College Hospital, London UK, which serves one of the most ethnically diverse and socioeconomically deprived populations in Europe.
In the past year, I have worked on the National Health Service (NHS) COVID frontline for two waves of the pandemic. In between these two waves, we had the tragic death of George Floyd and the rising of the Black Lives Matter movement. As the daughter of working-class Pakistani immigrants growing up socioeconomically deprived, I have seen how COVID-19 has affected those from ethnic minority groups, both professionally and personally.
As a Clinical Senior Lecturer, I normally work clinically 50 per cent of the time as a Palliative Care Consultant and 50 per cent as an academic, with a focus on respiratory research. In March 2020, when COVID hit the UK, I returned to clinical work full time. Our palliative care team at King’s College Hospital, London has been one of the busiest in the UK. We have seen more than 500 COVID patients in the past year alone. It became clear very quickly, that respiratory colleagues were struggling to manage symptoms and desperately needed guidance. Whilst working full time clinically, I convened and led a team of international palliative care and respiratory experts to publish an editorial in the European Respiratory Journal. This editorial not only provided urgent detailed symptom control guidance to respiratory physicians early in the first wave, but also included information leaflets developed in collaboration with the European Lung Foundation. These information leaflets directly address unmet COVID information for both patients and families. I saw quickly that patients whose first language was not English, were struggling to communicate with health professionals. Most of these patients had lost their translators because of visiting restrictions. To mitigate this, I urgently reached out to translation services to request pro-bono translation. By the end of April 2020, 24 different translations were available, including the top ten ethnic minority languages spoken in the UK. These leaflets are now being used globally and have been downloaded over 15,000 times. I recently took part in a webinar supporting doctors in India who were incredibly grateful for these resources – especially those leaflets translated in Hindi, Gujarati, Punjabi and Urdu.
New CovPall study shows UK COVID policies may have disproportionately impacted ethnic minority patients and families at end of life and the UK palliative care response may have been equal but inequitable
Against the backdrop described above, I was extremely fortunate to be asked to be a co-investigator for the CovPall study. CovPall is a collaborative study between Cicely Saunders Institute at King’s College London, and the Universities of Hull, York and Lancaster. It aims to understand the multinational specialist palliative and hospice care response to COVID-19. I led a team to focus specifically on the challenges that services faced managing the palliative care needs of those from ethnic minority groups during the first wave. This research has been published in BMJ Supportive and Palliative Care. We found that even though services reported delivering personalised care for patients from ethnic minority groups, UK wide COVID-19 policies may have disproportionately impacted people from ethnic minority groups at the end of life. In addition, the UK palliative care response may have been equal but inequitable. We provide clear recommendations on how to close the gap between those who receive the “best and most” and “least and worst” palliative care.
As we took a deep breath and tried to recover from the first wave, we knew that it was important to analyse our local data. King’s College Hospital serves one of the most ethnically diverse and socioeconomically deprived populations in Europe. Our data from the first wave of 344 patients has been the largest COVID palliative care dataset to date. It is also the largest ethnic minority palliative care dataset and the first to look at socioeconomic deprivation. The results of our data published in Palliative Medicine show that there was no significant difference between time from admission to palliative care referral for our patients from ethnic minority or socioeconomically deprived backgrounds. It felt meaningful to provide methods to the wider palliative care community on how they too could analyse if they are delivering equitable care to these groups.
When I was approached by Dr Jamilla Hussain to co-author an editorial on racism in palliative care, I knew the time was right. Stepping up to this editorial published in Palliative Medicine, as a British Pakistani Muslim from a poor socioeconomic background, I have felt incredibly vulnerable. I have been reflecting on why that is. I have concluded that it is because this work is not just about professional experience, but also about personal experience. Mine, my family’s and my community’s personal experiences. All things inherently part of me. So often over the years, I have seen people’s eyes glaze over when I talk about racial inequality and I have felt disheartened that some don’t care. That has been soul destroying and it is hard to keep going when you experience that. The support this editorial has generated in the palliative care community has left me feeling empowered. I hope we can build on this positive response going forward to result in meaningful change.
The personal and professional lived experiences of the past year have changed me. Previously, when I saw or experienced racial inequality, I would often keep quiet, not wanting to make a fuss. The notion that it is important to blend in as a person from an ethnic minority group was, I think, at the heart of this. But more important than my insecurities, are those people that I know personally and professionally who have no voice and no advocate. I have a vision of equitable palliative care for all and I am hopeful for what the future may hold.
Editor’s note: This post is among the Top Twenty most-viewed posts for 2021.
Links and resources
- Follow Sabrina Bajwah on Twitter @SBajwah and view her academic profile here.
- Coronavirus and the palliative care response: EAPC web page with links to publications and resources.
- Read more posts in the COVID-19 and the Palliative Care Response on the EAPC blog.
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