A selection of websites on palliative care

Recommended websites on palliative care by Dr Keith Barnard

Website of the week
One thing I have learnt from this week’s research is that ‘end-of-life care’ is now the popular term for palliative care. I am not sure this is a good thing. Telling someone they are going into an end-of-life care establishment seems to tell it too much like it is. Or maybe I am just too sensitive. 

But here is a site that does not mince words and I make it the website of the week because I have nothing but admiration for this organisation and its nurses. I have lost count of the times I have been grateful for their help, and they do it all without government money.

Not all people in need of palliative care are dying from cancer, but this is still one of the best places to go for information on all the types of financial, healthcare and social support available in these circumstances. 

There are other organisations that do great work in this area and I am not denigrating them by saying that for me, Macmillan are the tops.

Why go there: comprehensive coverage.
Downside: needs some work from the webmaster.
Information from: Macmillan Cancer Support.
Address: www.macmillan.org.uk/Home.aspx

NHS end-of-life care
The NHS End-of-Life Care programme was set up in 2004.

A sum of £12 million was set aside for this, although what impact this is going to make, I don’t know.

Most palliative care in the UK is funded by charities, which is a disgrace.

So how is this programme progressing?

If you visit this page you can read the progress report, but to me it all seems to be happening rather slowly.

The site is host to many useful resources and materials, including a newly-published document on advanced care planning. There are also links to useful external information, for example the relevant section of the Mental Capacity Act.

Why go there: full of good intentions.
Downside: slow progress.
Information from: NHS.
Address: www. endoflifecare.nhs.uk/eolc

Guide to management in care homes
I am not too sure about this guide to palliative care —  sorry, end-of-life care — in care homes.

It is a well presented 17-page PDF that talks about the issues and asks how health professionals, centred around the GP practice, can improve the lot of patients in this situation.

There are some case histories that illustrate frequently encountered management issues and how these might be addressed.

However, after reading it, and I may be being harsh by saying this, it struck me as more a list of aspirations than a dynamic ‘this is what you
do’ guide.

And I also suspect that this is because as the booklet acknowledges, facilities ‘might vary across the country’.

So when it comes down to it, however caring you are, you may not have the resources promised in the ideal NHS world. But one thing is for sure, we all do our best.

Why go there: some useful suggestions.
Downside: we cannot all access the suggestions.
Information from: National Council for Palliative Care.
Address: http://eolc.cbcl.co.uk/eolc/eolcpublications/Guide%20To%20EoLC%20care%20homes%20lo.pdf

Advice for health professionals
The Marie Curie Cancer Care is another organisation on a par with Macmillan who support patients and professionals and provide nurses in the community.

This address takes you straight to the part of the website that is dedicated to healthcare professionals.

One useful section offers advice on the role of the GP in caring for dying patients at home. It describes in detail the role of the GP and palliative care nurse specialist. There is a link to the Gold Standards Framework, and a PDF that tells you about the Marie Curie nursing service.

Why go there: targeted at GPs.
Downside: none.
Information from: Marie Curie Cancer Care.
Address: www.mariecurie.org.uk/ forhealthcareprofessionals/


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