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wobblybobbly
Posts: 15
Joined: Sat Jun 04, 2011 8:32 pm

disillusioned and fed up

Postby wobblybobbly » Mon Aug 22, 2011 9:47 pm

I am just so fed up of the NHS at the moment. I hate to generalise about hospitals and the nursing / doctor professions, but I am just so appalled at everything my poor dad is being put through. After being told he was jaundiced a week ago, he was transferred from a Sue Ryder Hospice (where he had been staying for them to sort out his pain mgt) to the local hospital, supposedly so they could do some more tests and CT scans to see if it was viable to insert a stent in his bile duct. But no, the week has bought nothing but hassle and upset for us, and more importantly my dad. He has spent the week just lieing in bed waiting.....and waiting....and waiting. He had one xray (as also has had pneumonia after chemo). The rest of the time he has just been in bed, being told they are waiting for CT scan appt to come through, getting weaker and weaker. In the meantime, his care has been awful. The strict regimen he had been told to follow in terms of his diabetes and pain mgt has gone out the window - no blood sugar tests or insulin before meals as is the norm - oh no, we have had to ask for the insulin injections, usually an hour and a half after his meals when Dad tells us he hasn't had them. The same goes for some other meds he is on, which he is meant to have before meals - they have arrived afterwards instead. When raised with the staff my dad had to face the wrath of a stroppy nurse, who told him he was being unreasonable and expecting too much. :shock: Only when my dad was in tears and telling them what they had done wrong in detail, did she finally back down and admit they had been wrong. After that meds on time, but no compassion or care shown. No more Dr visits. Told this morning he was being transferred back to Sue Ryder hospice, but before he went they would "squeeze him" in for a CT scan. Only came out after his wife made a formal complaint to the Dr, that they had forgotten all about him, and the request for the scan had never been entered on the system in the first place. :shock:

Anyway, I went to see him after work today, and he is in bed, very poorly indeed. In so much pain and just so upset because he still doesn't know what is happening about the jaundice, or whether it is going to be viable to do anything. They are trying to get his pain under control, but he has now become so depressed, it breaks my heart. I just feel he has been really let down - it is almost as if they don't think he is worth bothering about at the hospital. The Sue Ryder hospice is a complete contrast, full of lovely caring, compassionate staff. If only the hospital was like that. Apparently he should have had a blood transfusion while there also - something else they admit to not knowing what is happening with or even whether he still needs one.

I am sorry to offload, but I just need to get it out. My Dad's wife has set the wheels in motion to make a complaint - I just hope things improve before it goes through.

Thanks for listening, and sorry again.

A
xx

wobblybobbly
Posts: 15
Joined: Sat Jun 04, 2011 8:32 pm

Re: disillusioned and fed up

Postby wobblybobbly » Tue Aug 23, 2011 9:07 pm

Hi. Dad back in hospice - results of CT scan showed cancer spread to spleen now, and lesions on liver a lot bigger which is what is causing jaundice. Nothing they can do about it. He is very poorly with high temperature - they are treating an infection, but are not sure if it is - if not I have been told he could just have a couple of days left. My lovely dad so poorly. I wish I could make everything better for him - he is very confused and fidgety, and gets distressed by all the tubes and oxygen. Trying to keep his spirits up but so hard.

thank you for listening

Alison
xx

pamela
Posts: 27
Joined: Sun Aug 08, 2010 9:52 am

Re: disillusioned and fed up

Postby pamela » Tue Aug 23, 2011 9:51 pm

My heart goes out to you just spend special moments with your dad talking to him and being there.I shall never forget the special minutes with my dad those are so precious and will be with me forever.

endee
Posts: 17
Joined: Mon Jul 18, 2011 7:57 pm

Re: disillusioned and fed up

Postby endee » Wed Aug 24, 2011 12:01 pm

Hi

So sorry things are not looking good. Pamela is right, the time now needs to be spent together as family. It can be talking or just sitting quietly. My experience of the Hospice where my Mum spent her last hours was fantastic. If you have concerns talk to them.

Thinking of you all.

Endee
xx

wobblybobbly
Posts: 15
Joined: Sat Jun 04, 2011 8:32 pm

Re: disillusioned and fed up

Postby wobblybobbly » Wed Aug 24, 2011 8:22 pm

Hi

Thanks for the kind messages. The staff at the hospice are superb and are just so kind, and can;t do enough to make him comfortable. Dad hasn't improved despite antibiotics, and they think he is now experiencing liver failure. He is on a syringe driver for any pain, and also some sedatives, as he was very restless and kept getting disorientated and trying to get out of bed, even though he couldn't do safely. So now is he is just seemingly resting. I have been there all day, but have now come home until the morning - and having the usual guilt trip about not staying for the night. But I am exhausted, and guess I need to look after me too. I know they will ring me if he worsens.

Thanks again for the support.

Alison
xx

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: disillusioned and fed up

Postby louiepc » Wed Aug 24, 2011 9:23 pm

Hi, sorry that your Dad is so ill. Please try not to feel guilty about going home, you need to rest too, although saying that I would probably feel exactly the same as you.

Be there to hold his hand, he will know that you are there and that is the biggest comfort you can both have at this awful time.

My thoughts and prayers are with you all.
xx