Palletive care HELP!

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Hello, my dad collapsed with a brain tumor in February this year and shortly after found out he's got secondary lung cancer. Tumor removed, smashed his chemo and radiotherapy treatments but it has now spread to his blinking bones :( neck, shoulder, hip, thigh.. He is in some real pain and the nausea he is experience is relentless. He can't stomach anything to eat, he is starting to deteriate, I can see him losing weight fast. 

After 2 palletive care referrals from 2 different departments within a couple months, still not received any help. I have been on the phone to dad's GP and its a constant battle. It shouldn't be like this! I have no idea how to look into a hospice but I know dad wants to stay at home so then we need to look into making that work. It is a neglect of care and I am disgusted. We had to 999 the paramedics out last week in fear of sepsis/infection as he couldn't lift his head of the pillow and was yellow in colour, they couldn't believe how no care package had been put in place and they even tried helping me out by ringing around different departments. Just what is going off, I feel stuck!

  • Hi  

    So sorry you are going through this, have you had a referral to a hospice at all? When my wife was first diagnosed we were referred to the local hospice and are "on their books" but have not actually had any need to talk to them since. 

    There can be a massive divide between hospital care and care at home, the later is down to local councils and can sometimes be really overworked and underfunded.

    GP's sometimes feel powerless in this process too, perhaps if you ring our helpline they may be able to point you are services that might be able to support you where you are - services vary so much across the country - the classic postcode lottery.

    <<hugs>>

    Steve

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  • Hi, thank you so much for your reply. We had some changes yesterday. Unfortunately it has now spread to his kidneys hence the horrendous back pain he's been getting. The hospital actually offered him to stay at a local hospice yesterday to try and manage his pain but he really wants to stay at home. They have told him to keep taking his liquid morphine which he hates as it makes him so sleepy and bungs him up so then he has to take fibregel along side. They've put him back on steroids so hopefully he'll feel like eating very soon. It's all so difficult