Nancy Preston

Nancy Preston

I am a Senior Lecturer in Palliative Care at the International Observatory on End of Life Care, Lancaster University. I am a former palliative care nurse and teach on the PhD in Palliative Care.

Location Lancaster University

Activity

  • Nancy Preston made a comment

    I hope all goes well in your plans and please feeel free to let us know about any developments you make in your practice or even in the care you receive as a result of the course.

  • It's a distance learning course so all online except three mandatory trips to the UK for 1 week in the first three years. Feel free to browse the web pages and contact the team. We have students from all over the world.

  • I absolutely agree and it it is one of the findings I have tried to promote in other settings.

  • Here is a link to a 24 hour help line used in one part of the UK which has been very well received: http://www.airedale-trust.nhs.uk/yourhealth/services-and-support/gold-line/

  • This is a really interesting point. In many countries we don't have individual autonomy like in the many Northern European Countries but relational autonomy. This is where autonomy is shared with the family who often make the decisions as to what a patient is told but with the best interests of the patient at heart. We are currently doing a study about advance...

  • When we visited this seemed like such a good system. The main challenge was offering care to patients and families without cancer.

  • In week three we specifically look at the role of the GP based upon our research findings. As some have indicated lack of resources in the UK is an issue. Money is a huge issue and in the UK heavily supported by the local community.

  • We are currently running a trial on Advance Care Planning and will hopefully report results next year. here is the protocol paper https://bmccancer.biomedcentral.com/articles/10.1186/s12885-016-2298-x and links to the website https://www.action-acp.eu/

  • I think there are real differences in how pallaitive is interpreted internationally and is sometimes seen the same as euthanasia in some countries. We need a public health campaign to explain what it is.

  • Some intetresting perpectives here. In some countries it is just starting and hopefully they can learn from some of the mistakes already made. The UK is relatively compact compared to other countries where the role of volunteers is often essential just ebcause of the scale/size. However, there are less and less volunteers but in end of life care people still...

  • At the end of the course there are a set of recommendations about how to get more integrated palliative care which yu can rate. It will be great if as many of you as possible can do this activity so these decisions are informed by a broad perspective.

  • As everyone needs access to palliative care we all need exposure to education about it. By enhancing the knowledge of generalists most people will have an impact. The specialist then can deal with more complex cases. In the UK this is increasingly the model for managing non-malignant condictions.

  • Nancy Preston made a comment

    Indeed the Life Before Death Video gets the point across extremely effectively. There are a whole series of them. Our ATOME project went someway to try and improve legislation in Europe but a huge world wide issue still.

  • Welcome to all our latest joiners. Whilst the MOOC will predominsntly speak about nurses and doctors experiences in the best practice videos we hear from other including volunteers and an occupational therapist.

  • It was interesting speaking to Johan about the legislation. I really think this helps to underpin palliative care in Belgium. In the UK we just have guidance such as the National End of Life Strategy which has been updated https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/136431/End_of_life_strategy.pdf .

  • I am interested in your comments about the negative connotations of palliative. I experience the same especially when I was in clinical practice. Even now when people ask me what I lecture in it usually stops the conversation. We need a better understanding of what palliative care is. Later in the course we look at the terminology we use.

  • Welcome to the course. It is intereting to see some people with intersted in dementia too. Whilst this study didn't look at this specificially we do have another study trying to improve care in advance dementia in care homes using an intervention called Namaste http://www.namastetrial.org.uk/. Also just to flag that the MOOC is focussed on developing an...

  • We have something similar in the UK called Soul Midwives

  • Yes the role of the carer is really important. It wasn't the focus of our study but Prof Gunn Grande works in this area and has developed a carer assessment tool to assess their needs. here is a link to one of their studies http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0123012.

  • Yes social support can be crucial. I gave a link to the befriending service we evaluated which people really felt helped https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0746-8

  • Yes the term Macmillan is confusing as these roles often involve funding from Macmillan for the first 5 years but then the local community trust or hospice funds the role. Regardless of funding they are part of the primary care team and work with the GP. As specialist palliative care experts the GP may often defer to their knowledge as GPs are generalists in...

  • Yes the role of the carer is really important. It wasn't the focus of our study but Prof Gunn Grande works in this area and has developed a carer assessment tool to assess their needs. here is a link to one of their studies http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0123012.

  • Nancy Preston made a comment

    We evaluated the role of volunteers in a befriending role and found they were well received. Here is a link to a paper about it for those who are interested: https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0746-8

  • A few people have asked about the funding of services in Belgium. They largely have an insurance based system.

  • Palliative care can be given along side any treatment really including chronic care but also cancer care that leads to cure. It can sometimes be called supportive care which helps show it isn't just about terminal care. So yes some patients would be cured. Palliative care offer certain symptoms control that anyone can access such as pain control and...

  • I think they mainly provide policy documents and guidance. However, the produced the Prague Charter which stated palliative care is a human right. Sometimes these statements are used to try and change national policy.

  • Yes this is a good point. The service we show called Hospice at Home at the end of week one is in a rural setting and they use a lot of volunteers and go to the patients own home. In countries like Australia rural means a huge area and once again they use volunteers heavily. I don't think there are easy answers. A place that really relies on volunteers is...

  • The study by Temel in the US looked at early integration of palliative care and they explained it could support patients. The worry was lack of hope but not only did this not happen but patients survived longer than those who didn't get it early on. Sometimes the words supportive care is used which I think can be helpful. Here is a youtube video link about...

  • This is an interesting discussion. A team at Lancaster looked at the use of metaphors and noted that during treatment they are largely violence based ie fight cancer and at end of life more a journey such as passed away. I am not sure if any is openly available but here is a link : http://spcare.bmj.com/content/7/1/60. I think also as we get near to death...

  • The first week is more about national guidelines and policies. In our research we interviewed patients and their carers over three months and we report these findings in week three.

  • You make an interesting point especially as palliative care largely developed from religious orders. There are certainly trials in the UK about cannabis - here is a link to one http://www.nhs.uk/conditions/clinical-trials/pages/clinical-trial-details.aspx?TrialId=NCT00674609&Condition=Cannabis&pn=1&Rec=0&CT=0

  • Yes education of staff is really important and something the EAPC try to address. In many countries there is virtually no palliative care education available especially for nurses - the UK has much more. Also in the UK the National End of Life strategy recognises that most care at the end of life will be given by non-palliative care specialists and they also...

  • I think you highlight a challenge of palliative care. I guess the key theme is reducing suffering be it physical, psychological or existential. Not an easy balance always for patients, families and health care workers.

  • Unfortunately we can't really comment on clinical issues here

  • Hi Hazel
    You might find this paper interesting written from our department who are doing research on prisons: http://eprints.lancs.ac.uk/78305/1/Article_for_the_Prison_Service_Journal_V2.pdf
    Nancy

  • As you say even though palliative care in the UK is world leading it still has a long way to go. One way forward some suggest is use of advance care plans. We are currently running a study to look at this which helps direct medical practitioners. This in many ways takes a change in society to have the conversations and health care workers to be trained in...

  • There were considerable differences across countries in availability of drugs and legislation. How the services ran in some ways didn't differ too much once a patient was in front of you. Similar assessments were made and the focus was always on how could the palliative care service help. Given the differences it was surprising how many similarities there were...

  • I have added a link to the EAPC Paediatric palliative care paper you might find interesting http://www.eapcnet.eu/LinkClick.aspx?fileticket=6elzOURzUAY%3d&tabid=1432

  • Gracias por estas palabras-espero que hayan encontrado la versión española del libro útil

  • We mainly concentrated on the bigger patient groups with cancer, COPD and heart failure but obviously palliative care is for all. Here are some links to guidance from the European Association for Palliative Care on less represented groups. I have also included a paper on paediatric palliative care which is growing.

    I would recommend the EAPC as a very...

  • It's difficult to know what is enough but in general no country has enough. The UK is building less hospices but developing more home based services - if you watch the example from the UK on Hospice at Home this shows this at the end of the week.

  • If you look at section 1.12 I have added some resources about palliative care development in the Eastern Mediterranean and Africa which you will find interesting as you can imagine a very different picture.

  • The role of assisted deaths in palliative care is controversial and we won't resolve it here. Whilst most palliative care international societies are against it's involvement but this isn't the case in for example Belgium and the Netherlands. Here is a paper on this http://www.eapcnet.eu/LinkClick.aspx?fileticket=28Vb6OIn9SQ%3d.

  • Hi All
    There seemed to be a problem with the packet wall but hopefully fixed now. It works best on a PC though.
    Nancy

  • We think there was a problem with the packet but hopefully you can see and upload pictures now

  • It is very interesting to see where palliative care takes place and in most of the world care at the end of life is at home and there is huge variation in how we live.

  • Welcome to all of you. I am a nurse but obviously now work mainly in education and research. It is great to have people from all over the world on the course which hopefully you will all find interesting. Look out for links to free resources too.

  • For anyone wanting a Spanish version of the book accompanying the course this is now available on the InSup-C website or follow this link http://www.insup-c.eu/IntegratedPalliativeCare2016-es.pdf

  • Nancy Preston made a comment

    We have just finished a study evaluating the experience of a befriending service by volunteers which Dr Catherine Walshe is presenting at the Hospice UK Conference. Hopefully the paper will be published soon (currently out for review) but here is the published protocol if you are interested...

  • We had hoped to include a general comments information but feel free to add comments about your ranking here which we can take into consideration.

  • Nancy Preston made a comment

    Just to thank everyone once again. It is amazing to get such immediate feedback on our research and from the people in the palliative care community both those receiving it and offering it. Just reading your comments has given us a lot of food for thought which will help us as we conduct more research in the future.

    We wish you well in your future studies...

  • It was great to see a heart failure service which was so well established. This was in part recognising the needs of the specialists to support patients with their different expertise. Maybe the future for hospice care is more of this outreach to support other specialists rather than everyone coming to palliative care? Some great examples in the UK of nurses...

  • Nancy Preston made a comment

    In countries similar to the UK we hold individual patient autonomy as the most important aspect and want honesty for our patients. However, in Southern Europe and most of the world relational autonomy is the norm where the family knows more than the patient and culturally this is acceptable. We can get a clash of cultures in the UK when people from other...

  • The role of the GP is a tricky one and we were surprised at the situation in Hungary with doctors regular giving out personal phone numbers which whilst meant the patient got excellent support resulted in burn out for the doctors.
    In the UK there were some examples of excellent integration but also times when the GP felt completely deskilled - trying to...

  • How we share information about what is happening with each has been flagged here as particularly important. We are analysing this data separately to identify good practice but probably the best results were in relation to shared computer systems of which the Bradford example (this week) was the most comprehensive. Often these systems are outside the control of...

  • Hi Perdeep
    Could you let me know which paper you mean?
    Many thanks
    Nancy

  • You raise an important point about how researchers explain their findings in a meaningful way. This is often more difficult when we conduct research across languages as there is a certain level of translation back into English and the terms may make sense in principle but need more explanation in practice. The team are currently writing this paper so I will...

  • I think the need for compassion and dignity are coming up quite a bit. Whilst governments may try and insist on this it is difficult. There is another Futurelearn course you might find helpful looking at this https://www.futurelearn.com/courses/compassionate-care
    It started this week but still time to join.

  • Nancy Preston made a comment

    Here is a free resource about access to opioids across Europe from another European study http://eprints.lancs.ac.uk/82481/1/ATOME_Final_Report_dec2014.pdf

  • In the UK we still often use end of life and this is meant to mean the last year of life which again is confusing and not something people comprehend and I would include healthcare professionals in that.

  • Luckily we do - in week 3 if you watch the video from Bradford we interview a social worker. We only real came across them as part of the palliative care team in the UK and they often a lone worker. There seemed to be more physiotherapists though.

  • One palliative care team replaced palliative with supportive and doubled the referrals. Helpful to introduce palliative care input earlier but as some have said are we being open? Interesting to know your thoughts.

  • It's interesting that people like the taxonomy - we weren't sure how understandable it would be. We struggled to explain it so glad helpful for some. If you can think of an alternative name that would be interesting for us.

  • I am glad people like this example. Some have wondered how it is funded and it is through an insurance based system. I think it helps that the coverage is so wide and the huge number of staff they employ.

  • The world Health Organisation has recently come up with their own guidance on providing palliative care services which you can find here:

    http://www.who.int/ncds/management/palliative-care/palliative_care_services/en/

    As people have said it can be very difficult to know when to bring palliative care in and when can the team already caring for the...