On Monday, 13th May between 11am-12pm our wonderful Specialist Palliative Care and Support Line Nurse, Jan will be here on our Online Community to share information about our nursing services and answer any questions you may have.
Whether you have questions on managing day-to-day care, want to understand symptoms of treatment, are looking for financial information or just need a friendly ear – we’re here to listen and help.
If you have any questions you would like to ask Jan, please comment below or send them to us via private message.
my name is Jan, and I am a Specialist Palliative Care Nurse.
I am clinical support on the Marie Curie Information and Support Line and nurse support for the Well Being & Support Hub here in the hospice, where I have worked for the last 22 years.
I am looking forward to next Mondays Question and Answer session with our online community.
As an Information and Support Nurse I handle calls from people affected by terminal illness. I provide a safe space for the caller to share their story and feel really listened to. I share information and ensure important conversations are heard by the right healthcare professionals and signpost accordingly. This can include practical and clinical information and support on all aspects of end of life.
In addition, healthcare professionals are also most welcome to call to access information.
I am a member of the Specialist Palliative Care Team, hospice based. I am also nurse support for our developing Wellbeing and Support Hub, including our wonderful Dementia Activity groups and the Comfort Café for all those affected by a life limiting illness, including patients, and their friends and family.
To find out what support may be available in your local area, please contact our Support Line who will be able to discuss this with you.
Thank you for sharing Jan, it sounds like you have such an interesting role.
Absolutely, if anyone would like to find out what support is available to them, please call our Support Line on 0800 090 2309 or email support@mariecurie.org.uk, you’re also welcome to post here on our Online Community and a member of the team will get back to you.
For people who may not be familiar with Marie Curie, could you share information about what other nursing services we have Jan?
Community Clinical Nurse Specialist team – including the Specialist Palliative Care team
Hospice Care in the Home
Hospice based palliative care nurses – ward based.
We have lots of information about the support that we offer on our website here. If you would like to find out more or discuss what support may be available in your local area, please reach out to our Support Line. Our Support line isn’t able to refer you to these services but can explain which healthcare professionals you can talk to for a referral.
My nan lives with advanced dementia and is cared for by wonderful staff in a care home. But sometimes we notice things that we’re unsure about, like signs she might be in pain or distress, or that she hasn’t been out of bed for a while, and it can be tricky to know how to bring it up with her carers.
Do you have any tips for having those conversations, especially if it’s about potentially clinical issues (like pain)?
Palliative Care - Palliative treatment and care might focus on managing symptoms, planning for the future, getting equipment, or having someone to share your feelings with – overall, it aims to give you a good quality of life. You might have palliative care for years, and having it doesn’t mean you’re nearing the end of life.
End of Life Care – End of life care is support for people who are nearing the end of life. It usually starts to be offered to people thought to be in their last year of life, aiming to help them live as well and comfortably as possible in the time they have.
For more information about palliative care, visit our webpage here.
Thank you for taking the time to post your question to Jan. I’m sorry to hear about your nan’s diagnosis and all that you’re going through as a family. I’m sure we will be able to share some tips for having these conversations.
Don’t forget that we’re here on the Online Community for you too
I’m sorry to hear about your Nan and what you’re going through as a family.
Thank you for your question about your Nan, and potential pain assessment issues
Firstly you may find it helpful to ask for a clinical review with the GP, to rule out any under lying causes, that may be contributing to any discomfort that your Nan is experiencing, as there may be reversible causes, such as a urine infection/constipation. In addition it may be helpful to reach out to the District Nurse who can also support with unspoken communication with your Nan, and support the staff in the care home accordingly.
Thank you so much Jan, what brilliant suggestions.
You’re right Imogen, it can be tricky to know how to bring this up.
It may be helpful to plan what you’re going to say, you could write this down so that you don’t forget when you’re at the care home.
Try to find the right place and time if you can, perhaps asking someone to speak in private.
Also, try to speak honestly. With most difficult conversations, honesty is usually best. Try not to be worried about showing your emotions, as it’s normal to find these conversations difficult. Do not worry about using the ‘right’ words or phrasing – say whatever feels most natural and true to your situation.
If you feel it would be helpful you could also discuss this over the phone with Jan, our Information and Support Line nurse.
Jan, we often get calls to our Support Line from people wanting to know more about what to expect at the end of someone’s life. Is there anything you can share about this that may be helpful for our Online Community members?
At Marie Curie, we always look at whether something other than nearing the end of life might be causing someone’s health to get worse. We usually suggest having a face-to-face appointment with a GP. They can help to rule out infection or another cause that might need treating. By this doing, we may avoid someone needing to go to hospital and help maintain their wellbeing.
