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Skip to 0 minutes and 8 seconds Hospice at Home West Cumbria is a palliative care service in the Northwest of England. It covers the north Lake District, including coastal towns with areas of social deprivation. There is a largely ageing population with a sparse workforce. Hospice at Home Chief Executive, Linda Hewitt, talks about the provision of palliative care in this area. My name’s Linda Hewitt, and I’m currently Chief Executive of Hospice at Home West Cumbria. I’ve been involved with hospice from the outset. I worked as a hospice nurse, and clinical nurse specialist, and clinical services manager. And I’ve been in this role for the last three years. Delivering palliative care in rural areas has its challenges for the services provided.

Skip to 0 minutes and 49 seconds Well, Hospital at Home West Cumbria was established in 1987. And at the time, it was very much clinicians who were working in the grassroots really– GPs, clinical nurse specialists, nurses who recognised that there was an need for a hospice in West Cumbria other areas of the country were developing hospices. They were all developing hospice buildings or fundraising for hospice buildings. But we knew that a hospice building wouldn’t work in our area because of rurality, deprivation, and access to transport. So we had to come up with something different, and we recognised the need for hospice care but felt that we wanted to develop the hospice philosophy but keep that in people’s own homes.

Skip to 1 minute and 36 seconds So our aspiration at the outset was to develop a hospice at home service that had everything that you’d find in a hospice building but to develop that somehow to be provided in someone’s own home or the communal– local community. We think of our hospice as having 137,000 beds. So by that, we mean wherever a West Cumbrian person is, whether that’s an acute hospital, a community hospital, a residential care hall, a nursing hall. If we can enhance their end-of-life care, we’ll provide care for them wherever they are. Core to our hospice at home as you’d expect is nursing care. So we’ve got a whole nursing team. That’s made up of registered general nurses. Health care assistants increasingly volunteers.

Skip to 2 minutes and 24 seconds We provide additional care over and above what’s provided by district nurses, clinical nurse specialists, or health care workers in the community. So we aim to complement what you would regard as statutory services. So we don’t take over from them. We don’t go in place of the community nurse or the district nurse. We add value by providing extra care. A lot of that care’s at night. So it might be during the night that we can provide a hospice nurse to see over someone so that the family can get much needed rest. It’s very exhausting. It’s very tiring looking after someone at home.

Skip to 3 minutes and 1 second And if you can get a good night’s sleep knowing that there’s somebody caring for your loved one, it can enable you to continue caring at home. All kinds of health care workers recognise that the palliative care services provided need to fit the needs of the local area. I’m Dr Cheryll Timothy-Antoine. I’m a GP in the Workington area. People feel, I think because of their lifestyles, feel that need to try to be as independent as possible or can’t afford to get to certain places, or can’t afford to get in a hospital easily, or whatever. So you have people striving to be independent.

Skip to 3 minutes and 37 seconds And I think, for me, having that service that takes into consideration that one size doesn’t fit all has made a difference I think in working in this sort of setting. With so many services involved, staff need to know how and when to refer to the service. It can be at any point when I’m seeing a patient. But usually I have a good idea when I do my first assessment. I always leave them details and leaflets about what’s available through hospice. But I would also talk through things things. And obviously through my assessment, I could pick up what I feel might be useful for the patient.

Skip to 4 minutes and 16 seconds I might refer if they’re having problems with anxiety and I feel that some one to one support would be helpful or a complementary therapy. If I notice they’ve got edematous limbs, then I would refer to lymphedema. Also if people are quite poorly and coming towards end-of-life and struggling with symptom control, I might suggest that they have, that them people have some support from the nursing service over night. And also if the family have become quite tired because the person’s ill– they don’t like to leave them– then I might refer them. It would be useful for those people to have a little bit of time out to go out and do some just normal things that they would do.

Skip to 4 minutes and 55 seconds And the nurses could stay with the patients. So a lot of different times I would refer them to the service. From my point of view, it feels like it’s a team effort all the time. Because I think we’re all providing different things for the patient. So in my role as a GP, it would be taking a general overview of what’s happening in terms of making sure that what their needs are medically are there for them but in terms of the hospice at home or the district nursing teams over what feels like more of a pastoral role. And they’re able to be a bit closer than we really can be.

Skip to 5 minutes and 35 seconds So in the end, for me, it feels like it’s more of a team effort. And if there’s anything maybe someone else might think that is needed, we’re not seeing we can take advice from them. So it’s not just the GP that’s in charge. It’s everyone who is taking care of our patient who has a major role to play. We also on a Monday morning have a multidisciplinary team meeting where the CNSs, doctors, hospital CNSs and doctors as well– some of the leads in hospice, such as the support service lead, and also all the nurses who have been on call– hospice staff that have been on-call– they go through the different patients that they’ve been putting care into.

Skip to 6 minutes and 27 seconds So we have an opportunity to find out what’s happened to them over the weekend and also just to go around the table and bring anything else to that meeting if needs be. And also the GPs that I work with– they all have a primary health care team meeting, and I attend those on a weekly basis. And they are also attended by the district nurses. So that’s how I feel like I can keep up communication. If I need a GP in between, then I will call. Give them a ring. Palliative care services in the UK are highly dependent upon voluntary funding from local communities rather than state funding alone. We used to get about 33% of our funding from the NHS.

Skip to 7 minutes and 9 seconds Over the last six or seven years, that’s decreased significantly. And now it’s about 22% of funding from statutory NHS sources. The rest has to be raised locally through fundraising events, grant fundraising, legacies. We from time to time get some tremendous legacies. We wouldn’t want to be fully funded from the NHS, because then they put restrictions on what you can do with the money. But certainly, some more central funding would be beneficial, but the chances of that is highly unlikely really. So we just have to keep coming up with more imaginative way of raising money. But the community in West Cumbria are very, very loyal to Hospice at Home West Cumbria. They support us tremendously well.

Skip to 8 minutes and 0 seconds They think of us as their hospice, and there’s not many people now that haven’t been touched by the care that we deliver, or by someone they know, or who’ve got family members working for us. So we’re very, very well supported by the community and by the local press as well. Volunteers don’t only raise money but provide practical help as well. Across the whole organisation, we’ve got about 250 volunteers. But that include volunteers who are working and who are supporting our fundraising team, which is really important. But we also have volunteers on the reception of our new building in Finkle Street that provides a space for our family and bereavement support team and our lymphedema nursing team.

Skip to 8 minutes and 46 seconds So we’ve got volunteers on the reception. We’ve got volunteers in all our hospice shops. And as I’ve just described, we’ve got patient support volunteers. We have volunteers working in our family bereavement support team, and they undergo 40 hours of training spread over 10 weeks. And they see people who are bereaved or coming to terms with loss on a one-to-one basis and in group support. And they also need to meet with their clinical supervisors. So it’s a huge commitment in terms of time and emotional energy to work with people when their very, very vulnerable. My name’s Joan Hughes, and I volunteer. And I’ve been volunteering for 3 and 1/2 years at Hospice at Home.

Skip to 9 minutes and 33 seconds I’m on reception at Finkle Street, Tuesday afternoons. I coordinate at the carer’s group, and I deal with other fundraising things as well. People often volunteer after a personal experience and find volunteering rewarding. I decided that when I finished work– because my bother had cancer– and I thought, right, I’m going to put something back into for myself and for the community. So I decided I would become a volunteer with hospice. And I have done a few different roles over the last 3 and 1/2 years. I’ve met a lot of people over the last few years and carers and patients. And I found them very inspirational, and I just think it’s– I just like to be involved in it.

Skip to 10 minutes and 24 seconds It’s such a good organisation. All services need to be dynamic and can see scope for development. I’ve got to say I think the service is excellent. And as I’ve already said, it’s developed so much. The one thing I do think would help– we struggled for social care at times. And sometimes our patients are on that cusp where they’re just not quite nursing intervention where they need nursing. But they may need just a little bit more than what social care could provide. And I just feel if hospice at all could expand in any way, it would tap that little group of carers. Services also recognise the need to educate other practitioners. I think there’s always room for improvement.

Skip to 11 minutes and 9 seconds I think if we had more funds available to us, we could look to see how we could extend our services. I’m very conscious that we don’t have a social worker in our team. I think that would be an asset to the team. I could also think that if our ambition is to improve end of life care for everybody in West Cumbria, we cannot do that on our own. Not everybody who is dying will receive direct services from Hospice at Home. So we’ve got to look at educating other people who are providing care. At the moment, we do quite a lot of education, but that’s with the staff who are already in post.

Skip to 11 minutes and 46 seconds It would be a nice I think to extend our own education team to be able to educate more of the staff in care homes, more of the staff in domiciliary care. Finally, there are some key steps to developing a service. So first and foremost, you’ve got to engage with the community and the professionals who are already providing care. You’ve got to speak to GPs, district nurses, social workers. Find out what the gaps are, what you could give that would enhance the care that’s already being provided in the community. I think you’ve also got to very quickly establish what model of care that you want to provide.

Skip to 12 minutes and 25 seconds I’m aware of other Hospice at Homes up and down the country who offer a very different model to the one that we do. They will actually go in and provide all the care and replace, instead of the district nurses. But that’s not what we do. We work with the community nurses. We work with the clinical nurse specialists and provide that additional support. And then finally, you need to engage the people in the community, because you’ve really got to get their backing and get them to take your hospice at home to their heart. Because you will need a lot of volunteers, and you will need a lot of money from the community. But it’s achievable. It’s possible.

Effective practice in palliative care: an example from the UK

A number of aspects have been raised and discussed regarding integrated palliative care in Week 1 of the course.

This final activity presents two examples of palliative care services in Europe, featuring interviews and discussions with the very people involved in the provision: patients, volunteers, and healthcare professionals.

The first example is that of Hospice at Home located in West Cumbria, North West England.

The initiative was set up in 1987 and is an example of delivering specialist palliative care across a large rural area, offering an alternative to the provision of care within one building.

As you watch the film, consider what you think are important features in this service example.

You can also read about David’s experience on page 43 in Integrated Palliative Care.

Additional reading

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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This video is from the free online course:

Palliative Care: Making it Work

Lancaster University