Skip to 0 minutes and 8 seconds Bradford is a large former industrial city in the north of England. It has a population of over half a million people, and has the fastest growing population in the UK outside of London. It’s a multicultural city. The Marie Curie Hospice is built in a residential area set on a hill with stunning views overlooking this former mill town. The hospice was opened in 2001. In this video, we’ll interview a number of staff from the hospice and local community about the services the hospice provides. We began by asking– what works well?
Skip to 0 minutes and 44 seconds One of the good things about the services that we provide is that it is a hospice, and it’s a good introduction to the hospice, because a lot of people come to a hospice, and think it’s just a place where they come to die. One of the benefits of the hospice service in the UK is that they often offer a day unit where patients can come to meet others and have access to health care professionals. Patients really appreciate this service. One of the unique services offered at Bradford is specifically designed for patients with heart failure. This service involves collaboration between community heart failure nurses and the hospice team. Here, the medical director describes how the service was set up.
Skip to 1 minute and 26 seconds Well, we’ve sort of been able to develop a specific support service for heart failure patients. And that’s been running for about 15 years now. And we’re probably one of the first places in the country to offer that kind of support that was based in a hospice. Heart failure nurses are key to this service as they offer expertise in managing heart failure patients as well as understanding their palliative care needs. My name’s Karen Rees. I’m one of the community heart failure nurses here in Bradford. And I help support the heart failure support group for heart failure patients here at the Marie Curie Centre in Bradford.
Skip to 2 minutes and 6 seconds The palliative care service was set up in combination with our service to provide streamlined care for patients who have heart failure, providing support group network, but also looking at once they become within the end stages of heart failure, in providing support for families and the patients. And we have really close links with Marie Curie Centre. For this to be possible, some cross education was required between the palliative care and heart failure teams. So they came to us and said, can we collaborate? Can we work together to try and provide better care?
Skip to 2 minutes and 45 seconds And part of that we did by doing joint education for each other’s services, learning about each other’s services, because a palliative care service didn’t feel very confident about looking after people with heart failure, and by starting to do some joint home visits to patients, joint consultations to think about symptom management. And then after about a year or so, the heart failure nurses said, well, we would actually like to run a support group for our patients, but we would like to run it in the hospice environment, because we think that’s a much pleasanter environment than trying to run it in a hospital outpatient setting. However, this is a real team approach, with many people involved, such as occupational therapists.
Skip to 3 minutes and 32 seconds We get to see people for the whole journey, really, because sometimes I’ll get referred someone in the community. I’ll see them before they come into the hospice. I’ll see them as an inpatient. Then through the therapy that we do, we’ll then encourage them to join the day therapy unit. So we get to see them on the whole journey of that, which is quite nice. The hospice volunteers also play a part in this care. They cover reception at the weekend and evenings. They do work in the kitchen. They work on the wards. They transport people into the hospice, every day of the week, the volunteers. They are in fundraising. A bereavement service with volunteers who are qualified.
Skip to 4 minutes and 20 seconds And admin– there are people working in the admin office, as well. Volunteers get a sense of satisfaction from this involvement. I’ve always had the aptitude to be able to speak to people, whether it be bad or good, working customer service. So I wanted something that was face-to-face, really. I needed to do something because I’d work full time, and I really felt that something like this was good. I’d heard about. I volunteered before I actually finished work to make sure that everything was in line so that I could more or less walk in after I’d finished work. Beyond the hospice, the role of the GP and community nurses are also crucial.
Skip to 5 minutes and 6 seconds This is enhanced in Bradford by an effective IT system which links the hospice and community teams. What works well is that we have an electronic records system which is used by all of the GPs and all of the other providers that are providing care for their heart failure patients. That means that we have instant access to their notes, whoever’s providing their care, and we can communicate very effectively between each other. The GP explains how this helps him to keep up to date with what is happening with their patients. Because we’re all on the same system, electronic system, that is relatively easy.
Skip to 5 minutes and 44 seconds All of the record will be on there, whenever they’re seen by the heart failure nurses, or whether they’re seen here in day care, or when they’re discharged from the inpatient beds. You can send tasks, which is a kind of message, to anybody on the system, from anybody else on the system. And that is invaluable to bring your attention to the fact that your patient may have been in the hospice and has now been discharged. Access to out of hours hours care can be stressful for patients. And the gold line service ensures patients can speak to someone who is able to see their medical notes and their medical history.
Skip to 6 minutes and 21 seconds We’re very fortunate in Bradford having the Gold Line which is situated at our hospital. And this is available 24 hours a day where patients who are on the palliative care registers are referred to the Gold Line and are able to phone that anytime of day or night for advice about their condition and their symptoms. The nurses who answer the phones have got access to their shared clinical record and are able to very effectively support them and advise them what they think is appropriate. The vast majority of the calls are actually dealt with by the nurses– and– just by advice.
Skip to 7 minutes and 3 seconds And a few of the callers are then asked for a GP visit, so the out of hours doctor sees the patients, and very few of the patients may be advised to go to A&E. But the figures that we’ve had are excellent in the reduction in the number of A&E attenances. And it enables patients to stay at home even when they’re distressed, and it’s very, very effective. With so many people involved, sometimes it’s difficult to know who has overall responsibility for the patient. Heart failure patients tend to stay with heart failure nurses, but, ultimately, responsibility for all patients out in the community is with their GP.
Skip to 7 minutes and 45 seconds Well, I think overall I would say that it’s still the heart failure nurses that take responsibility because they do provide this fantastic continuity of going on and seeing people after they’ve finished attending the support group back at home. I guess when they’re actually in the building here, then I would say it would be the day therapy leader that was responsible for the hospice staff that care for them. And in terms of symptom management, I would say that that was myself. We asked the team what they felt worked particularly well in the service. I think the support group itself.
Skip to 8 minutes and 25 seconds I’ve been very surprised and impressed really at the way in which patients interact with each other, that they actually– that the group kind of develops its own character really, and people learn enormously from each other. They watch each other, how they move around.
Skip to 8 minutes and 50 seconds And in some cases, become quite competitive, like I said, in the exercise group, of sort of saying, well, you know, he managed to do 10 of the stand-up, sit-down exercises, so I’m going to do 12. Or they say, well, you know, he’s actually much more poorly than I am, but if he’s able to do that, then, and actually, I ought to be able to do it as well. So that’s fascinating to watch people interacting in that way. And also for things like advance care planning, which we discuss with patients in a group. And that’s– you know, advanced care planning is very sensitive subject.
Skip to 9 minutes and 25 seconds And quite often, if you talk to people individually about that, it’s difficult to judge the right time to have a conversation with them. And they may sort of shy off, and say, no, I’m not ready to have that discussion yet. But within a group setting, they seem to feel safe and secure to listen to a conversation. So even if they were not themselves at the point of wanting to make a decision about whether it would be right be resuscitated or not, for example, they will listen to other people talk about their experiences of care, and maybe of having been resuscitated whilst they were in hospital, and people saying, no, I absolutely wouldn’t want that.
Skip to 10 minutes and 11 seconds And you can see them really engaging and listening and thinking those issues through. And quite often even people who have been very reluctant and wary of engaging directly in it, over the course of a few weeks, you see them change in that and start to kind of engage in a discussion with the rest of the group. And maybe come to a point of wanting to make decisions themselves about their own care and to have those decisions documented. Delivering integrated palliative care involves the cooperation of motivated people with a passion for palliative care.
Skip to 10 minutes and 50 seconds I’ve being qualified a couple years, and I was working in social services at the time, and just had a couple of patients on my case load that had palliative conditions. And it just made me want to understand a little bit more and obviously get the time to work with people where it’s not the quick pace of like, the acute trust, you know, it’s very fast. We’re looking at discharge all the time. I wanted to work more at managing the condition. And obviously working with families, and in the, you know, the environment where they live, so that’s really what brought me into it. This leads to excellent services for patients, which hopefully they benefit from.
Skip to 11 minutes and 32 seconds This confirmed by one of the Bradford Hospice day care patients. It was, as I say, I came here for 12 weeks after I came out. They sent me over for 12 weeks, and I’ve been here ever since. So when they kick me out. I’m going to come back as a volunteer.
Effective practice in palliative care: an example from the UK
This final example of effective practice in palliative care comes from the UK.
The Marie Curie Hospice is based in the city of Bradford and opened in 2001. A unique feature of this service is that it offers specialist palliative care services for patients with heart failure.
One of the contributors mentions the “Gold Line” - a dedicated service for people nearing the end of their lives. Do you have similar services in your area? If so, please share a link.
As with previous examples shown throughout the course, consider what you think are important features in this service example.
Further examples of integrated palliative care across Europe are available in the free book which accompanies this course (see ‘Downloads’ section at the bottom of this page).
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