Advanced end stage liver disease - palliative care in the community

Dear Nettie the Wettie, 

Thanks for reaching out to us here at Macmillan. I’m Gemma and I’m one of the Cancer Information Nurses here at the support line.

Accepting palliative care in the community can be a difficult decision to make. We understand that you may not have felt ready to have it before but would like to request it now.  Your own GP will be able to make this referral for you.

As things have become slightly worse, and as you are unsure about how much morphine to take, we do urge you to request to have a review as soon as possible.

It sounds like you might have already made arrangements with a local hospice for when the time is right. You could also call their patient contact phone line to request community services, as they will work closely with the community palliative care teams too. Most hospices will have contact details clearly signposted on their website.

You could also request a review with your GP, or if the GP is not able to attend then the other service who can help in a timely way are NHS111. Many people feel anxious about talking morphine or stronger pain medication, so we want to reassure you these feelings are normal. You may find this link with common questions about painkillers useful to look through.

Often the district nursing service can step in to provide excellent palliative care at home too. Either on their own or alongside the community palliative care team.  This is usually set up through the GP or by hospital referral, and sometimes by NHS 111.

You may benefit from a holistic needs assessment, which is a thorough assessment of all your needs physical and emotional. This can be carried out by any health care professional connected to you.

It may be helpful to consider anticipatory medicines, sometimes referred to as a ‘just in case box’. This is a box of medicines to keep in the house just in case’ you need them. They can be accessed by any health care professional who may do a house call and can prevent unnecessary hospital admissions.

If you think it would be useful to speak with one of our nurses directly. Please do not hesitate to pick up the phone as we are always happy to help and talk through any concerns you are having. If it easier for your wife to call, she is equally welcome to. We are here 7 days a week and available on 0808 808 0000.

Our ref: AC/GJ