People with a life-limiting illness will no longer be allowed to slip through the care net – thanks to the work being carried out at the Wolfson Palliative Care Research Centre. The Centre helps people with life-limiting illnesses to live as well as they can, and, when the time comes, give them control of symptoms and courage as they die.
The Wolfson Palliative Care Research Centre is part of the Hull York Medical School. The Wolfson Foundation, a charity which supports excellence in medical research, awarded a £500,000 grant to the University to help fund the new £2.4m centre, to build on ongoing palliative care research, aiming to improve care for the terminally ill in the UK and further afield.
One of the projects that researchers are working on will develop a checklist for doctors and nurses to use when someone has a terminal illness. It will ensure that, in addition to physical and psychological problems, the patient’s legal concerns, money worries, and their fears for their family and themselves are heard so an action plan is developed and followed.
Professor Miriam Johnson, who is heading up the Wolfson Centre, says that they are conducting rigorous research across the UK with patients and their families to make sure that the right questions are included and that checklists are tailored to different conditions such as Parkinson’s disease, chronic lung conditions and cancer.
She says: “This piece of work is so important to the future care of patients. Many people have not been given the best possible care, they haven’t been asked difficult questions and they haven’t been given the help to live well at the end of their life. We need to give people courage to face the things that frighten them and the help to deal with them. We want to make sure that people are honoured as people rather than a condition. Our major hope is that we will improve people’s quality of life. Palliative care is not just for the last weeks of someone’s life. Palliative care is there to help people from the point of diagnosis and people can live for a long time after that point with an unnecessarily poor quality of life and a lot of fear and worry.”
The development of these checklists is just one strand of work that will take place at the centre. Miriam will also head projects that look at how to help patients who suffer from breathlessness and how we should manage cancer patients suffering from dangerous blood clots in hospices. Miriam, who still practises once a week at Scarborough’s St Catherine’s Hospice, to keep in touch with the front line, says she feels passionate about the underdog.
She explains: “For me the work we are focusing on is forgotten things. Things that really matter to people, patients and families, but have not been the subject of a huge amount of research.”
She says that she is already beginning to make breakthrough discoveries. Scanning the brain of people with breathlessness has revealed that when cold air was blown across their face people felt less breathless and the brain scans appeared to reflect this change. Other studies using a small battery-operated hand-held fan to blow cool air across the face helped people recover from breathlessness more quickly. She believes that other small breakthroughs that make big differences will continue to be made by the Centre. But the biggest breakthrough she wants to make is to demystify palliative care.
“People are frightened of the word palliative,” she says. “If you leave the monster in the cupboard, it will make a big racket; if you bring it out into the light, it will shrink. We believe that our work will help people face that monster, and give people the courage to live a better life and to die as well as they can.”
Paul Ramsbottom, Chief Executive of the Wolfson Foundation, who has visited the new Health Campus, says: “Improving end of life care is one of the most important challenges facing healthcare. We were very impressed by the excellence of research at the University of Hull, which is well positioned to make significant advancements in the support of people who are dying and their families.”
Annie Jones and her family are among those who have benefited from the support of palliative care services in the past.
“Dealing with terminal or chronic illness is a daunting, and often frightening, experience for the affected individual and their family,” she says. “Specialist palliative care services not only provide medical treatment and emotional support but also aim to maintain quality of life regardless of an individual’s condition. We live in a society where death remains a relatively taboo subject. Providing good, robust evidence through research is therefore vital in terms of improving care, removing some of the social stigmas and increasing awareness. Gaining funding for new and possibly innovative interventions is critical. These interventions range from new drug treatments to practical advice, such as reducing breathlessness or other symptoms experienced by people with these conditions.”
Annie became involved with Miriam’s work at the Wolfson Palliative Care Research Centre, which is part of the Supportive Care, Early Diagnosis and Advanced Disease (SEDA) Research group, in 2010 as a Patient Public Involvement (PPI) representative.
“I have been involved in a number of research projects and grant applications for funding,” she says. “Involving the lay public in medical research provides a ‘real world’ aspect that in the past may have been overlooked in academic research. Lay input can also provide an insight into some of the day-to-day practicalities of living with a chronic or terminal illness.
“In addition, research projects often involve a huge commitment from participants in terms of time or clinic visits. This is sometimes overlooked. It may also present problems for researchers in terms of getting people to take part in these vital studies. The Wolfson Palliative Care Research Centre and multi-disciplinary SEDA research group are dedicated to making a difference to people with chronic or terminal illness. It is a privilege to be part of this team.”