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Palliative Care what is their role? It feels like we've been left to look after my dad by ourselves

Lottie54
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Hi

My dad was discharged from hospital 3 days ago with no treatment as his cancer is now terminal. He has LMD.

My dad can’t stand or walk now. He isn’t eating or talking. The carers are saying they can’t get him out of bed now so they can’t really do anything more. We don’t fully understand when we should be giving him the oramorphe as it’s just says ‘as required’ but dad can’t speak to tell is if he’s in pain but no one has given any guidance dad was just sent home with a bag of medication that has conflicting instructions on them. 

We were told we would get support from Palliative Care but we had had to chase it up as no one has been to see dad and check on him since he left hospital 3 days ago. When I spoke to them the lady was quite detached and was saying there’s a capacity issue and if we want she would try and come tomorrow. Is this normal? 

My dads practice manager from his doctors has just rung me and said this palliative care nurse rang them and tried to push dads care onto them and she also agreed she was very detached. 

Is this normal or should we have had support by now? 

  • Hello Lottie54

    I'm so sorry to hear that your Dad has been told that there is nothing more they can do for him regarding treatment and that he's now been discharged home. It sounds like it's a really difficult time for you all, and not having someone coordinating your Dad's care only adds to that pressure. 

    Palliative care services really do differ across the country, so it's difficult to say what you should or can expect from your local service, but certainly, at the very least, you deserve to have contact with someone who shows empathy to your Dad's circumstances. 

    I'm unsure if you've had a visit from the palliative care team since your post. If not, then I'd suggest calling your Dad's GP surgery on Monday morning and telling them that you want someone to come out and assess your Dad and ensure that the correct support is put in place. It may be that you have to be firm with them but do let them know that your Dad is very unwell and you have been left adrift without correct support or advice on pain management. 

    If over the weekend you have any concerns about your Dad's health, you can always call NHS 111. They should make your Dad a priority patient due to his diagnosis so don't be afraid to call them if you have concerns. 

    Sadly with the pressures that are put on community services, there can be times when the standards we would expect for our loved ones aren't always met. Don't be afraid to advocate for your Dad's care, but also for yourselves as a family. It's good to hear that your Dad has a care package in place already and you can always ask the carers to pass on messages to the palliative team, your Dad's GP or district nurses if they have concerns about his condition as well. 

    I really hope that you can get the support you all need, Lottie54. If it would help to talk with one of our nurses you can call them on 0808 800 4040, Monday to Friday, 9am to 5pm. 

    Sending you all my best wishes, 
    Jenn
    Cancer Chat moderator 

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