Hello, please can anyone help? My brother (confirmed cirrhosis) asked to go to hospital yesterday as he can no longer walk and had fallen.
He then turned back up at 11pm in an ambulance. Completely incontinent, unable to walk. Lives with my 79 yo Mum who cannot lift him. We have no discharge/admission notes. He was shaking so I ended up giving him some whiskey as he’s dependent and epileptic. He didn’t know if anyone has given him meds or not. We have put him on a pull out bed downstairs at Mum’s. I just don’t know where to go from here. Nothing will be open yet but I thought maybe call the doctor? 111? He can’t live at my Mum’s like this. He can barely move. He’s on benefits. Does anyone know what palliative care options there might be? I will of course phone everyone I can once the world opens up but for now I’m at a bit of a loss.
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Worriedsis
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We are sorry for the challenges you are facing. We encourage you to use NHS 111 if you think you need medical help right now. They can direct you to the best place to get help if you cannot contact your GP during the day, or when your GP is closed (out of hours).
Call 111 if you have complex problems caused by an existing medical condition, have a care plan from your doctor for your current health, or need to get end-of-life care.
You may have contacted the appropriate services by now and in addition to GP/111, suggest local alcohol support team/social work department for advice and guidance. You and your mum should be supported as carers too.
We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).
If you would find it helpful to speak to others with shared experience, you can register to join a group here
We also have this information on our website which may be helpful:
Chronic liver disease is an unpredictable condition. However, there are some symptoms that indicate the liver has become so badly damaged it can no longer work properly – this is known as ‘decompensated cirrhosis’. It’s important for patients with decompensated cirrhosis to have the opportunity to talk about the impact of their condition, and to think about their wishes for the future.
This information will help you talk to your hepatology team, GP, relatives and carers about how you would like your future care to progress, and encourage you to start those conversations early, so you can make your preferred care options clear.
Although these conversations can be difficult, patients and their families or carers often find that planning ahead brings them peace of mind. Your healthcare team and loved ones need to understand your wishes and be aware of your thoughts and preferences.
For more detailed information you can download our Thinking ahead booklet, which also covers end of life care in a separate section that can be looked at when you feel ready.
My heart goes out to you as this is an awful situation for you all. I guess they had no free beds at the hospital and are on critical alert. We get this quite a bit when my husband goes for a drain but he is mobile and continent. I don't know how your local NHS trust works but there should be a patient advisory section (PALS where we live) and also a Healthwatch body in your area who can give you support and advice and also who you can lodge a complaint with if you wish to go down that route. Their details should be on the hospital website. I hope you can get something resolved today.
Thanks for responding. He was ordered back there by the doctor due to low platelets and has been admitted now. He says the palliative care team have chatted to him so we are hoping there will be an option for him to receive hospice care or nursing home care rather than going home to my Mum's who really isn't capable of caring for him anymore. So sad. I've had help from PALS before and that's a great idea. They do help you push for the best care. Thanks for your help x
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