Research Active: an insight into how hospices in the East Midlands are delivering research
Research takes places in all settings, not just hospitals. Here, we explore how research is being embedded within Ashgate Hospice in Chesterfield…
Alison is a patient at Ashgate Hospice who is taking part in the MePFAC study, which is exploring whether the drug Methylphenidate can be used treat fatigue for patients with cancer.
“It’s difficult to describe the impact of fatigue,” Alison says, “and when someone pulled me to the side and asked ‘can I have a word with you?’ and explained that taking part in research could help me, I wasn’t sure what to expect. But I’m very glad that I gave research a go.”
Taking part in their first NIHR study is the culmination of Ashgate’s journey to become research ready. “We’d previously dabbled in research,” Dr Sarah Parnacott, Medical Director Ashgate Hospicecare says, “but we recognised that making delivering research part of our mission here was something that could benefit patients, staff and the wider community. We worked closely with the Clinical Research Network East Midlands to become research ready and everyone’s hard work is now beginning to pay off.
Participation is offered to eligible patients who are experiencing fatigue as part of their condition and, are approached by staff who discuss the study and invite patients to take part. Once consented, the trial itself sees patients receiving either the drug or a placebo twice daily, with a gradual increase in the dosage proscribed. Weekly updates with the research team give participants an opportunity to provide insight into the effects and to review whether the dosage needs to be altered.
“One of the challenges that we quickly identified was finding the correct point at which to ask people to take part,” Georgie Stain, Community Specialist Palliative Care Nurse explains. “We did find a couple of people choosing not to take part because of the time commitment, but we have also seen great enthusiasm from people who want to see if they can improve their own condition and help us improve treatment for the future.”
Based on their experience so far, Sarah believes that Ashgate’s involvement in research raised the profile of the hospice and give it a reputation as a dynamic, forward-thinking organisation, which has helped with the recruitment, development and retention of staff.
And the benefits for patients are clear too. “Knowing that we are taking part in research helps to reassure patients that we are constantly seeking ways to support them, and gives them the confidence that they are getting up-to-date, appropriate care from us,” she adds. “We’re hoping that our progress will continue and that research at the hospice will grow and grow.”
Alison’s own experience has led her to encourage other people to be part of research. “It has really given me a belief that there are people there who are trying to help you,” she says. “Staff at the hospice are so supportive and caring, and this just helps demonstrate further their commitment to try and help people like me.”
“Most people I’ve spoken to are positive about the idea of being involved in research to help themselves and others,” Alison adds. “But patients need to know more; we need to get the word out and make people aware of the opportunities so that even more people can be part of research.”