Terminal illness

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Santino 8 months ago

5 replies

What am I missing here? This is the discussion form for living with a terminal illness I only joined this site 15 minutes ago and it would appear that my post on this forum is the first in over a year is this right.

I would have expected more of a discussion on Palliative Care and End of Life Care, Would be grateful to be redirected to where patients, carers , family and others can get into peer support and discussion on living with any stage/class of any terminal illness.

Thanks in advance

admin 8 months ago

Hello Santino,

Welcome to our Online Community, thank you for joining us.

Firstly, we would like to apologise that our Online Community isn’t as active as we would like it to be at the moment. We’re currently working to improve the experience of our Online Community and would like to hear from people like yourself about what you would like to see from the platform.

Unfortunately, as you have observed there haven’t been any posts within this topic area for a while. You can however find some more recent posts in other areas of the Community, however, again it’s not the thriving Community we would like it to be.

We need more people like you to make the first step (as you have done) and engage in conversation with other members. Hopefully other people will see your post and join the discussion on living with a terminal illness.

If you would like to share your experience and help shape our Online Community, please get in touch with us – we would love to hear from you.

In the meantime, we know that Sue Ryder have an end of life and terminal illness section on their Community that you may wish to explore.

We can only apologise again,

Marie Curie Online Community Team 💛

Santino 8 months ago

Have a look at Healthunlocked website which is used by BHF and others.

Reference to 'incurable' 'Terminal' 'Advanced' 'life limiting' 'chonric' OK these terms can be unsettling to Patients, family and carers the use of stage/Class as in Dementia, Cancers CKD, Huntington, Parkinson's Heart failure with be covered by Palliative care & End of Life care both of which are seperate specialisms but are generally confused as being the same. This was the case for me when I was first approached about EoLC which I found hard to accept at first First and foremost Shared decision marking, Preferences and wishes of the patient and others where the patient has consented.

admin 8 months ago

Thank you for sharing Santino, it’s really helpful to hear about your experience.

Thank you for mentioning HealthUnlocked, we are aware of the platform but perhaps others here on the Online Community aren’t so thank you so much for sharing. It’s understandable that some terms can be upsetting. You mentioned shared decision making, preferences and wishes of the patient, we have lots of information about planning ahead on our website, we hope this helps people to begin having these conversations.

We are in development for a new platform which we hope will give more people the chance to discuss palliative care and terminal illness. We would like our new Online Community to be more accessible, easier to navigate, to enable more activity and engagement to take place. We want to create a safe space where people can connect with other people in similar situations.

If you see any other posts on our Online Community and feel able to join the conversation and share your experience, please do. There are some more recent posts within our ‘welcome’ section of the Community.

dairoberts23 8 months ago

Well I can join in as I have just joined the group and am also confused about care at this stage of a disease. My wife was diagnosed with MND last year so we dont know when the end will come. i am confused about what is end of life care and palliative care with this disease as there are no treatments and death is a certainty. Anyway maybe some light could be shed on this and the associated topic of cost of care. Thanks

Dai