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Research says hospice care was compromised across West Midlands during pandemic but there is hope for the future

During the Covid-19 pandemic hospice care across the West Midlands fell below the “gold-standard” despite the best efforts of frontline healthcare professionals.

This news is revealed today in a report from the end of life charity, Marie Curie, based on research from the University of Warwick.

The research is the first of its kind to examine the direct experiences of hospice patients, carers, hospice staff, and senior managers during the pandemic.

It found that personalised, holistic care for patients and families was compromised at times despite the best efforts of hospice staff to maintain it.

This was due to guidance being updated frequently, personal protective equipment (PPE) making patient care challenging and the suspension of volunteers who were in patient facing roles.

The report also says that changes to rules about visiting resulted in many friends and family not being with the person at the end of their life, which caused emotional distress for the people being cared for and hospice staff.

Despite these challenges, local hospices played a vital role in caring for people dying at home by sending their staff into patient’s homes and care homes and using technology to stay in touch with the people they were supporting.

The research said bereavement during the pandemic was extremely challenging for carers. Hospice staff were also left exhausted, leaving some at risk of long-term burnout and in need of specialist bereavement and mental health support.

Given the population of the West Midlands – with one in three people being from an ethnic minority group and its level of deprivation being above the national average – the report’s findings could help shape national end of life care policy as the UK recovers from Covid-19.

The report makes several recommendations, including the need for 24:7 palliative care services, improved mental health and bereavement support, and more flexible care for people with English as their second language and for people with dementia.

In addition, Marie Curie is calling for Integrated Care Bodies – the NHS bodies responsible for commissioning local health services - in the West Midlands and nationally to prioritise palliative and end of life care in their plans for local health services.

The study was conducted by researchers from the Universities of Warwick, Sheffield and Hertfordshire, and was supported by Marie Curie

Dr Sarah Wells, Medical Director, at the Marie Curie Hospice, West Midlands, says:

“The day after the first lockdown was the worst day of my career. That was the day that we had to ask all the visitors to go home. Everyone had to say goodbye to their loved ones. Some knew they wouldn’t see them again. It was devastating. It went against every instinct of mine as a palliative care doctor, but the friends and relatives of patients understood why we were having to do this. They were selfless and stoic in the face of unprecedented challenges.”

Julian Knight, Member of Parliament for Solihull, says:

“I pay tribute to the people of the West Midlands who went through so much during the Covid-19 pandemic and especially to local hospice staff who made heroic efforts to care for people with a terminal illness and their families in very challenging circumstances. The Government has just introduced the first ever legal duty to commission palliative care services in the history of the NHS. I hope this will help hospices continue their vital work to ensure local people and their families have all the care and support they need at the end of their lives.”

Marie Curie Associate Professor John MacArtney from the University of Warwick, who led the study, says:

“For many people with a terminal illness, contracting Covid-19 results in the reduction of both time and quality of life they have left.

“When we spoke with people across the West Midlands, it became clear that for more than two-years the pandemic, and the protections put in place to mitigate the virus, had challenged hospices’ gold standard of providing personalised and holistic care at the end of life.

“But we also found that hospices had worked hard to find new ways to support people towards the end of life, while also balancing the new challenges the pandemic brought. This study has numerous lessons to share that can help shape the Covid recovery for end of life care across the whole country.”

The research comprised of 70 interviews across seven hospices in the West Midlands. Researchers conducted analysis of over 225 documents of guidance, procedures, and data. It was funded by the Economic and Social Research Council (ESRC) as part of UK Research and Innovation's rapid response to COVID-19. It included researchers from the Universities of Warwick, Sheffield and Hertfordshire, and was supported by Marie Curie.


Editors’ Notes

About Marie Curie

Marie Curie is the UK's leading end of life charity.  The charity provides essential frontline nursing and hospice care for people with any terminal illness, a free support line and a wealth of information and support on all aspects of dying, death and bereavement. It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end of life care and bereavement support.

Please note we are 'Marie Curie' (not 'Marie Curie Cancer Care').

The University of Warwick is one of the world’s leading research institutions, ranked in the UK’s top 10 and world top 80 universities. Since its foundation in 1965 Warwick has established a reputation of scientific excellence, through the Faculty of Science, Engineering and Medicine (which includes WMG and the Warwick Medical School).

9 June 2022

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