Hi All, Hope everyone is ok? So I have been on and asked a few questions. Yesterday my Mum showed me a scratch on her shoulder and I couldn't believe how thing she now is. Ive never noticed as she is covered up in the day and with he Ascites too. My Dad and I are struggling to get her to eat, she eats very very little, when we tell her about it we get our head bitten off. Dad has also told me she has been refusing to take her meds. I know if I all the doctor he wont speak to me, she wont ring the Doctors as she is stubborn and I know that she is scared she could go back into hospital. Shes extremely snappy, wont listen to us. I don't know what else to do. Should I just make an appointment with the doctor regardless and see if he will speak with me??
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Toffegirl
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Hello,
This is a really difficult situation for you and your father to be in. It sounds as if your mother is severely malnourished, this is common with end stage liver disease. I wonder whether she was ever seen by a dietician. The fact that she is refusing to take her medications is obviously a big concern too. It is possible that she has low grade hepatic encephalopathy which is altering her capacity to make logical decisions. Are you able to contact her medical team at her hospital - perhaps call the consultants secretary? I fear you may be right about the GP not wanting to talk to you or your father but if you are concerned about your mpother's capacity to make sensible judgements about her own well being and safety then I would hope that the doctor would agree to talk to you.
IThank you for your reply. She has not been seen by a dietician and we have told the dr and consultants over and over again that she is eat very little and nothing has even been mentioned. It does feel like she isn't getting the help she is needing and we are not sure what to do. The consultant called last week and to be honest we came off the phone no better off. Her stomach is still swollen nothing has been mentioned about that.
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This is a very sad situation to have to be in. It’s not just the patient who suffers, but all those connected with them. Doctors have a duty of care towards their patients.
When dealing with doctors (especially at this difficult time), always remain polite, but manage to get your concerns across in a controlled manner. If you allow your passions to get the better of you, this will only lead to frustration and a possible short temper outburst.
This is what I would do if I was in your shoes. I would, first of all, relax and calm down. Deep breathing may help with this. Think about what it is you want to say and ask. I would then request a consultation with the head of the practice. They are ultimately responsible.
Explain your concerns and use words like, “Duty of care”, Explain that your mother has frequent serious HE episodes. She refuses to eat. Mention that the family are really worried about her welfare, and of her wellbeing. Ask if there is anything the medical practice is going to do about this? If the answer comes back as a negative one. I would then ask that a note be made on your mother's medical file, that treatment and care have been refused. This put the onus squarely at the medical practises door.
I would also make contact with “HealthWatch”: healthwatch.co.uk/ HealthWatch step in when things breakdown between a patient and a Doctor. They act as a “go-between” and work to resolve issues like this. Just visit their site and enter your postal town and give them a call.
Just try and remain in control when dealing with medical staff, Sometimes our feelings can get the better of us, and our message and passion can become lost.
Be strong and firm, but remain polite and in control.
I have also had similar issues with my mum too. I have, in the past, emailed the GP as then they don’t have to ‘speak’ to you or release any personal information regarding your mum but you can put across your concerns which her GP will read and can make informed decisions on whether to call her into the practice for them to make an assessment of her. This has been an effective method for my family but I suspect it will very much depend on the GP.
This for me has been the hardest part of managing my mum in the community, as she will not say when she feels unwell for fear of going back into hospital which unfortunately often means that she has to stay in for longer when she does go in.
We have just had some of the supplement drinks supplied which my mum does quite like and we also encourage her to snack and have smaller meals more regularly although it is a battle.
It is very, very difficult to see someone you love waste away in front of you. I feel for you and am in the same position as you. Remember to look after yourself too x
Hi Alex, thank you for your reply and so sorry to hear you are in the same position. I spoke to my Mums GP yesterday and he left me furious. I mentioned that she hadn't had a liver blood test for nearly 2 months, he asked me if she should have them on a monthly basis!!! I mentioned that I have spoke to a liver nurse at the hospital and she has said they need to see her, I asked if he could refer and he said 'just go to A&E' on the blood test that the nurse requested he said they don't have any appointments for 2 weeks. He did nothing to help at all. Luckily there was a cancellation for this morning. So, she has a scan on Friday and then we are taking her to A&E to be admitted. I just hope that they know why we are taking her in and then they can give her the right treatment. My Dad and I feel that because this is caused through alcohol its self inflicted and that she is being left due to this. I so sorry to be on here moaning and I know others are going through an awful time too. I feel I can let of steam on here and the replies I receive back understand and have been so helpful. xxx
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