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October 13th is World Hospice and Palliative Care Day. This year’s theme is ‘Palliative Care – Because I Matter’. Please don’t ignore this blog if you’re thinking ‘this isn’t for me’. Our editor Liza explains here just what palliative care is, and how it might be helpful for you or a loved one.
So, what is palliative care?
You may think that palliative care is just for people nearing the end of life. But this is not always the case.
It simply means treating symptoms and side effects of a disease and its treatment. Palliative care is often also called supportive care. It’s basically making someone feel a bit better. This can include emotional, practical, spiritual and social help, as well as physical care.
Because palliative care is often given near the end of life, it’s often ‘pigeon-holed’ into that category – meaning people only associate ‘palliative’ with ‘dying’.
But this type of supportive care can start at diagnosis and be used throughout treatment. It is not just something to ask about when you or someone you know is feeling their worst, but something to know about as soon as possible. This will prepare you to access the right care when it’s needed – whether that is at the end of life or sooner.
Where can you get palliative care?
If you have symptoms or side effects that are causing you problems, you can speak to your GP about being referred to a palliative care unit in a hospital or a hospice. Often people think of a hospice as being somewhere to die. Although this can be the case, some people go into a hospice for a short stay to help control their symptoms. Many hospices also have day centres. This means you can visit for help and support, without staying overnight. Hospices also offer support such as counselling and psychological support.
Can you get palliative care at home?
Community or district nurses can make regular home visits, change dressings, give medicine and support family and friends. They can also help with practical comforts, like pressure-relieving mattresses.
Macmillan palliative care nurses specialise in managing pain and symptoms, as well as giving emotional support to people and their families. They don’t usually provide daily care, but can visit regularly and advise you about clinical questions as well as emotional and practical help.
Watch Macmillan community nurse Mandy explain her job in this video:
Marie Curie nurses are available in some parts of the UK. They offer support in your home and are usually arranged through the district nurse.
How do you plan palliative care?
Talking to your healthcare team is the best place to start. You can ask them questions about palliative care before you get to a point of urgent need. This can help you figure out who to contact if you think you or someone you know needs palliative care, and what care options are available.
We hope this blog has helped you better understand palliative care. If you have any questions you would like to ask us, call the Macmillan support line free on 0808 808 00 00. Lines are open Monday to Friday, 9am to 8pm.
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The Macmillan team is here to help. Our cancer support specialists can answer your questions, offer support, or simply listen if you need a chat. Call us free on 0808 808 00 00.
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The reassuring affect of belonging to a lymphoma group
Last evening I attended our monthly lymphoma group meeting. As usual there was a decent turnout of over 20 patients - some had traveled over 15 miles, but most live within an urban area that comprises the local hospital group.
They are all regular attenders because it's one of those events in the calendar that promises some social enjoyment as well as a lively discussion of wide ranging haematology matters, and usually includes a speaker.
For people burdened to some degree with the permanent doubt about how their lymphoma ailment will progress, and of course when, the opportunity to share their daily experiences amounts to some of the finest therapy.
To be amongst smiling friends, acquaintances and informative presenters is a most reassuring experience.
To be a solid support for patients all it needs is someone with a little vision, a social personality and supportive medical staff (we have them all).
It makes an incredible difference.
Hello Discourse,Thank you for your comment. It's good to hear that you have found such a great source of support and social enjoyment. Support groups can be a great way to share, make friends, and feel understood. Your lymphoma group certainly sounds like it does all that and more, which is lovely to hear.
I hope you're finding the Online Community a helpful source of support and friendship as well. Remember you can also call us on 0808 808 00 00, Monday to Friday from 9am to 8pm, if you want to chat.
Thanks for sharing and have a good day,
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