Case study: Spotlight on hospice research in Kent, Surrey and Sussex

The Hospice UK Award is given to the hospice, or group of hospices which has made significant progress in becoming research active through contributing to NIHR Portfolio studies. St Michael’s Hospice in Hastings was given the award for their work on the DIScOver trial (Comparing disability in activities of daily living over time among adults with advanced lung cancer or respiratory disease).

Karen Clarke, Chief Executive of St Michael’s Hospice said: “Participating in the DIScOver study meant that St Michael’s Hospice (Hastings) transitioned from being research aware to becoming research active. Despite the pandemic, we felt it was important to drive ahead with this ambition, support a study aligned with our work and contribute to research evidence for patients with advanced respiratory disease; this is more prevalent in Hastings and Rother than in other parts of the country. We were delighted to find that in the final month of the study we recruited the highest number of participants and were the second highest recruiter overall.

“I’m very proud of the team for making our first research steps so successful and establishing a research culture in our hospice. Thanks to Dr Declan Cawley, Medical Director for leading the work, Matt Wheatley, Rehabilitation Lead for working so hard to recruit participants and Wendy Lancaster, Head of Quality Improvement and Support Services for enabling the infrastructure to be in place to do this. We are very grateful to the National Institute for Health Research and Hospice UK for recognising our work and for this award.”

Dr Declan Cawley, Medical Director at St Michael’s Hospice and an experienced palliative care researcher said: “A lot of effort was put into the study in a short space of time. There was commitment from the Board and we had the energy and desire to commit to and deliver the study. It is testament to the whole team of people who facilitated that process.

“From my experience, delivering Chief Investigator-led research is difficult if you don’t have the infrastructure in place. When I came into post 18 months ago I was tasked with driving the research agenda forward and raising awareness of research within the hospice. If you are not a research active organisation how do you know if it adds value and not see it as an added extra to do.

“There is an appetite to run studies with the Chief Executive encouraging the organisation to become research active. This helped us move forward and gain the support of the Board who allocated resources to build the research infrastructure. The resources were not just monetary but an investment in people to work on the study.

“The next step was to deliver a NIHR Portfolio study. Having put in that effort early on to gain buy-in from colleagues helped when we needed to move at pace as everyone was already engaged. This enabled us to open and recruit 33 patients to the study within three weeks.

“We also worked with the local hospital trust, East Sussex NHS Trust and their community support respiratory team to recruit participants to ensure we had a broad range of patients.

Pilgrims Hospices in east Kent was awarded a Special Commendation for their involvement in palliative care research over the last 12 years. The hospice has recruited 1,584 participants across their three sites on 14 studies and is the overall highest recruiting hospice on the NIHR Clinical Research Network (CRN) portfolio.

Charlotte Bridgen, Research Facilitator at Pilgrims Hospice said: “As a charitable hospice Pilgrims is very proud to be awarded this special commendation for palliative care research. There are so many people to thank as collaboration has been the key to our success.

“First, and most importantly, to thank the patients for their contribution and to the clinical staff and volunteers for their enthusiasm and support with study activities. To East Kent Hospitals and University of Kent, who respectively supported us to recruit to our first drug trial and be co-applicant on our first national study. To the academic departments around the country who have guided us through the trials process and enabled us to get up and running with portfolio studies. Without their patient support we would not have had the opportunity to help our patients in this way.

“Finally to our executive team and trustees who have seen the value in research leading to improved patient care and supported all our efforts.”

Pilgrims Hospices saw the importance of palliative care research and invested in a Research Facilitator post in 2012. As well as supporting research governance, study set up, delivery, and dissemination, this role has enabled the hospice to further develop its own research by supporting staff and collaborating with the University of Kent. This led to the hospice becoming a co-applicant on its first national study (OPEL: Optimum hospice at home services for end-of-life care: protocol of a mixed-methods study employing realist evaluation) which was funded by the NIHR Health Services and Delivery Research (HS&DR) Programme between 2017 to 2020. This study was a collaboration between the Centre of Health Services Studies (CHSS) at the University of Kent CHSS, Pilgrims Hospices in east Kent, and the Universities of Cambridge and Surrey.

Collaboration with East Kent University Hospital Foundation Trust has been key in developing the breadth of research activity over the past few years. This included the first clinical trial (MePFAC: Methylphenidateversus placebo for fatigue in advanced cancer - MePFAC study), and Pilgrims was one of only a small number of hospices to have opened a controlled drug trial. The hospital trust hosted the study and provided pharmacy and pathology support.

In 2019, further collaboration established a hospice Research Nurse post, again hosted by the Trust. This role provides the hospice with a breadth of experience from the acute sector as well as increased research links between the two organisations. The post had previously been hosted centrally by the CRN after the hospice had secured a NIHR Research for Patient Benefit research grant in 2007, and has enabled the hospice to continue to participate in portfolio studies ever since.

Palliative care research in Kent, Surrey and Sussex hospices was hit hard by the pandemic with research staff being redeployed to acute trusts or moved to support their clinical colleagues. Hospice research appears to be in a recovery phase, with collaboration being the way forward.

Kent, Sussex and Surrey hospice collaborations are working hard to create research that meets the needs of the communities they serve. To do this the hospices are building links with local universities, acute trusts, the Applied Research Collaboration (ARC), as well as reaching out to other regions. This mirrors the emphasis within the current NIHR Palliative and End of Life Care Research Partnership funding call.

Photo: St Michael's Hospice - Wendy Lancaster (left) Dr Declan Cawley (centre) and Karen Clarke (right).

Pilgrims Hospices (image taken prior the pandemic) - Sarah Stirrup, Research Nurse (left), Charlotte Brigden, Research Facilitator (centre) and Dr Andrew Thorns, Research Lead, Consultant and Medical Director (right)