Dimbleby Marie Curie Research Fund

The Dimbleby Marie Curie Research Fund, now closed, offered two calls for funding in 2010 and 2011. This has supported research into the palliative care needs of patients who have cancer and other terminal illnesses.

You can find out more about this work below.

Here you can watch videos about some of the fascinating projects funded by the Dimbleby Marie Curie Research Fund, and read the research abstracts.

Current research projects

The following projects have been funded by the Dimbleby Marie Curie Research Fund.

Video transcription

It's, in fact, family carers who give the most support and care for people at the end of life. It's not part of medicine, doctors, or nurses, or GPs, or anyone else. It's the carer, and often that isn't acknowledged.

By this project, we are wanting to, first of all, identify people who are caring for people at the end of life because that's key. This research matters because carers matter so much. Helping them would actually have a large impact, more than any other input, I would think, and because there's been so little work to date that what, at this stage, would actually be very effective. It's shown that, actually, when someone is at the end of life, with an illness, whether it's cancer or there's organ failure or frailty, they have a specific trajectory. Now the carers, especially in cancer, have a similar trajectory.

So at diagnosis, they're very distressed and then might get a bit better with the care. Then they get home, and it goes down again. So carers themselves are going through a multidimensional trajectory of distress in these four dimensions, and we've mapped this out and published it in BMJ. And so, really, we're trying to integrate the care for them together with the patient. I think carer work needs to be looking towards their assets, allowing carers to actually realize, and free them up to use their own assets to actually promote health in the people they love for, rather than say, "Just a carer", not acknowledge them, and they feel they can't do anything and feel disempowered.

By assets, I mean, it's their own individual, what they can bring, what they have as a person, to acknowledge that. That's a very important rule, and they're doing well. And how can we help them do that to empower them? That's what I would mean by assets. So there's individual assets of the carer, and there's community assets. And if they're linked in with the wider community, whether it be a church or a bowling club or whatever, just actually encouraging them to actually use that asset and encouraging that asset, that community group, to get involved and support people at the end of life.

That is the health-promoting part of care. So that type of ...Again, we're talking about looking at assets, looking at the carer's assets because if they're supported and helped and they feel they're coping, they'll feel, "Hey, I can cope with this. There's a meaning in this. I'm coping." And that could be a very strong message. So we're actually looking at not only giving them a service, but helping them do what they can do well and grow through it.

Carers can bring a lot of things. They have their own thoughts. They've got their own tactics. They have got their own support systems. And if you just say to a carer, "How do you think we can help?" They will say something, and they will have an idea that might well be the best idea. So allowing them to actually bring to the table what they are thinking, acknowledging that, and working from where that is.

So I wouldn't say, "What we should do is this." We'd say, "What do you think we should do?" And they will say what they think to do. And then if I have something different, I'd say, "Well, I was thinking about this." And then together we come to actually what, possibly, is the best thing that's happening.

Video transcription

There are more and more people caring for older relatives, or for partners, or spouses, or other close persons that they live with, and that population will only increase. Also, the reasons why people are dying are very different now. People are less likely to die from infections, acute heart attacks, problems like that.
We're moving more to chronic comorbidity, illnesses such as obstructive airway disease, dementia is becoming a lot more common. I think, if we can show the burden that has placed upon some carers, and how it can affect the health within populations, that makes a very strong case for providing more support to cohabitees and carers of people with life-limiting illness.

We're looking at the experience and impact that caring has on people in terms of the impact that it has on their general health and their day-to-day wellbeing. What we're doing is using a large database which covers thousands of general practices and millions of patients. By doing that, we can provide some really big headline data about the impact that caring has on people's health. And we're comparing people who care for someone who's dying with dementia, with someone with cancer, with someone with chronic obstructive pulmonary disease.

We're identifying patients who have died with those illnesses, and then looking at the health of their carers before the person dies and after the person dies. At the moment, a lot of caring is very hidden within the community, and lots of people may not actually identify themselves as carers. Being a carer can be different for everyone. No two carers have the same experiences, but in certain illnesses, caring can be different.

For example, if you're caring for someone with dementia, the person with dementia may be confused at night. They may be wandering around the house at night. Carers of people with dementia can get very exhausted and very tired. If you're caring for someone with, for example, chronic obstructive pulmonary disease, the caring burden may be slightly different in that that person may be cognitively and mentally well, but there may be a high physical care burden, and the person may need more help with moving around, and washing, and dressing. But at the moment, we don't really know what those differences may be, and this is something where our research project may provide some of the answers.

If we can see where people most need support, that support can be directed. An example of people with dementia, maybe the carers and people who live with someone with dementia need a lot more support before their death, and maybe the people who are caring for someone with cancer need more support after the death. It just helps us to focus, perhaps, our care and our services to where it's really needed. We will look at lots of different experiences and different factors. We can look at the carer's health before the person that they are looking after dies, and then we can look and see how that changes after the person has died.

There's some evidence to suggest that people who care for someone with dementia may actually feel better and their health may improve after the person with dementia has died, because the burden is very different. And they experience a slow and anticipatory bereavement, whereas when someone dies with cancer or other illnesses, there's some evidence to suggest that their health may worsen after the person they've cared for dies. But that's very speculative, and doing this kind of analysis helps you tease out whether there's any truth in this.

I think it's so important because carers do the majority of the care, and I think health professionals often figure out that the carer is with this person, and they are with the dying process 24 hours a day and seven days a week. They often neglect their own health. They often don't look after themselves, and I think that any research that helps us to quantify the burden and the stress on carers is very important.

Video transcription

We know that many people would prefer to die at home that aren't enable to at the moment. And one of the issues I think is that pain management is not adequately controlled or successfully managed at home and that sometimes leads to patients being admitted unnecessarily. What we're hoping is that if we develop and evaluate an intervention that does work, carers will be enabled or empowered to manage pain better in the home. What we're seeing is that more people are taking on that, that caring role in the community to care for their relatives, their parents or their spouse at home. And that involves a great range of tasks and one of those is managing pain medicines. What we're saying is that it's the carers that's with the patient all the time, it's not necessarily the healthcare professional, so they need to be constantly able to manage the symptoms, to think about when pain control might not be working or when medicines need to change.

Through looking at the literature, we've found that there are a lot of needs, concerns, lack of information that carers have about medicines. Their beliefs about medicines; uncertainties about managing injections or strong opioids, for example. There's a great need there to do some work with carers, to help them manage pain and medicines better at home. What we hope is that, that will contribute to their feelings of well-being, reduce the strain on them, we also hope, obviously that it will contribute to better management of pain in the home setting. We hope that that would be, obviously a better experience for the patient at the end life. It might also contribute to them staying at home to die at the end of life, if that's their wish.

Certainly, what we're seeing from the literature that we've looked at so far is, that carers have concerns about issues around whether medicines are addictive, whether in fact administering pain medicines might hasten death. We heard today, a little bit about carers concerns about pain medicines causing drowsiness and issues around losing their loved one if there's a perceived over-medication. And there were also issues around being able to distinguish between, when there's too much pain medicines given, how to recognize when symptoms break through. So there's a whole cluster of issues around fears and concerns about using particularly strong opioid medications as well the literature around the side effects of pain medicines and how to manage those issues like constipation and nausea.

Of course, there's been a lot of work to identify what the concerns, the beliefs are, what the information leads are, which actually have been very little, that has introduced or evaluated, what we're calling an intervention for care. What we're hoping to do is develop something that actually makes a difference to them. And to actually engage the nurses who are delivering care in the community to patients and their families to actually work with the carers. What we'd like to think is that if our intervention is successful that it's something that might be rowed at into practice. Something that the nurses can work with to help carers take a more active role in medicines' management at home.

So what we're hoping to do in the first phase of the research is actually to work with carers and work with healthcare professionals and with patients to actually start to understand what is it they need in practice, to be able to manage pain medicines better because we don't know that, at the moment. So we want to hear from nurses and from carers about what are the things that would make a difference to practice. What we're hoping in the second phase of the research is that we developed a package that will work, that nurses can deliver in routine practice. It's not something that's done by a specialist or by a researcher, who then goes away but it's something that nurses will be able to integrate into their daily practice to help carers better manage medicines.

Video transcription

This project is a systematic review or an extended systematic review of evaluations and research on volunteer initiatives in end of life care. This will be groundbreaking work that's never been done before. In addition to looking at research, we aim to collate information on current provision of volunteers in end of life organizations, such as hospices.

The volunteers are at the core of caring for patients and families. In fact, they've been at the core right from the very beginning. They are very involved in the care of patients and their families. They're also very cost effective.

Continual investment in end of life research is very important, particularly as this area of research has been very underfunded in the past.

Video transcription

The grant that we've received will contribute to a project looking at volunteers supporting the care of dying patients and relatives who are with their loved ones when they are dying, in order to give them support both emotionally and just be a presence for people who are dying.

The project will be based in a teaching hospital, the Royal Liverpool University Hospital. And I think often in that environment we have very good nurses in care, but often they don't have as much time as they would like to spend with dying patients and their relatives. So it will be there to supplement and complement the current health care professionals' care for these patients.

Volunteers have a huge role to play in the delivery of hospice and palliative care in the U.K., but interestingly, traditionally have not been involved in the dying phase and supporting patients and their relatives. We have just completed an EU funded research collaborative, where we've learned from our partners, particularly in Germany and Italy, of models of care where volunteers do support dying patients, and we want to bring that model of education and care into the U.K.

We will obviously be evaluating the study and seeing how the volunteer presence, if and how it helps with the staff and also from the bereaved relatives' point of view around the care. And if our findings are positive, then we would look to disseminate those findings more widely so that this type of education program and volunteer support can be available across the country.

Well, end of life care is something that all of us need in society and increasingly with our aging population, with people having longer trajectories of life and living, also more of us are dying expected deaths. So the need to support people in the last year, months, and days of life is becoming a bigger societal problem and issue. And I think it's vital that we have good research to enable us to do that in the best possible way.

Video transcription

Nick Ockenden: I guess this research is responding to a couple of major challenges at the moment around volunteering. There's fewer people volunteering nationally, and there's major funding costs coming in across all sectors. That's something that hospices and other organizations are experiencing as well. What we want to do is identify ways to get organizations that involve volunteers around and to have direct contact with their patients and their families. How they can respond to these challenges. We know there's a lot of good practice out there, but just sometimes it's quite isolated.

We want to do a survey of hospices across the country, find out what's going on and follow that up with a number of in-depth case studies, where we can really drill down and find out about all these issues, find out about volunteer involvement, and how it could develop into the future. And really coming together with a series of good practice principles, and good practice guide, which we hope will be very very useful for organizations that involve volunteers.

I think we'd like to achieve an improvement in experience of volunteers, and ways in which they're managed and supported which will hopefully improve the effectiveness and have no kind of effects to those patients and families who receive support from them. I think also there's a real focus on trying to improve the experience of the organizations that involve volunteers. Hopefully, they can involve new approaches and methods of volunteer involvement, improve the treatment and attention of volunteers as well.

Volunteers are actually crucial to end of life care. One key advantage is the relationship that they can form with patients and their families. It's about the added value nature of volunteering while engendering the trust that they can form. Just simply knowing that they are there because they're not being paid. It's their choice to be there. That's usually beneficial to patients. The scale of it is huge as well.

In 2004 the Institute of Volunteering Research did a study of hospices in the UK. We found out that there's approximately about 100,000 volunteers across the country and that just illustrates that these hospices would not be able to function without volunteers.

Professor Shelia Payne: Volunteers are engaged in helping patients directly and family members. A lot of volunteers work away, supporting, for example, fundraising, but the research we're going to focus on are those with direct involvement with patients. And is powerful because it'll influence policy of what...We know that volunteers are engaged in hospices. What we don't know is how best to support them, and what are the range of things that they can do. This work is going to be crucial in determining best use of resources for the future.

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