After seven weeks, during which I suspect my enquiry was forgotten, I finally got the answer I needed. It was what I had suspected and anticipated.
The NHS assessment nurse who took my enquiry said my husband's consultant at his care home would make the decision as to whether he is eligible for CC but that if their decision was 'yes' he would have to be transferred to a hospital bed. That was the end of the discussion as far as I'm concerned. We waited ten months for a place in the care home, it is very probably the best in Scotland (it's for ex servicemen), has an excellent, justified reputation and it would be the cruellest thing I ever did to have Eddie transferred so that I could be relieved of the financial burdon of our contribution to his care costs.
Since his admission in September the staff have come to understand his needs, his personality and I know they are very fond of him. They can make him smile and laugh (albeit faintly) and he gets the greatest care. How could I possibly deprive him of that?
Take care
SheilaN
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SheilaN
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Sheila - my first thought was what a wicked world, but it is all the rules and red tape that makes it that way, play games with peoples emotions, as you say just no decision to make, I am glad that Eddie is in friendly caring accommodation.
take care
X
Dear Sheila,
Please don't give up. I had appointments with city councillors, wrote to MP, threatened with TV coverage, had a copy of the hospital neurologists letter etc. etc,. You can appeal. I don't know if Scottish law is different to English but I have never heard of having to have a hospital bed to get CC, FIGHT FIGHT FIGHT.
Thank you for your encouraging comments. I probably did give in too easily and will ring up tomorrow and talk about it again.
Take care
SheilaN
That's appalling-they are virtually blackmailing you both into relinquishing your claim! If he is in a nursing home he should be entitled to palliative care there. If he is at end stage in a residential home he should still have the choice of a hospice bed. I have never heard of someone having to go to hospital to prove their case. Have you told your PSP Association rep? I would definitely write to your MP as it seems you are having even worse treatment than many of us have encountered! Good luck and don't let them put you off an appeal.
Thanks Dianne. Interestingly enough the GP's at the home have already asked us what our end of life care decisions are and if we would want Eddie transferred to a hospital. Of course we said no. The responses to my blog have encouraged me to keep pursuing it.
It would appear that the CHC process and decision making is different in Scotland to that in England and that the consultant plays a more central role in the final decision regarding eligibility and setting for care.
Nevertheless the CHC Guidelines for Scotland are quite clear that any decision, and the rationale behind the decision , regarding a CHC assessment , should be made clear to the patient and/or family etc. which doesnt seem to have happened in your case.
You should ask to see the consultant, about this decision, for a full explanation and clarification,
Below is a link to the CHC Guidelines for Scotland -- paragraphs 9,50,73,74,75 are particularly relevant to you. Para 9 seems to indicate that in Scotland CHC care is more likely to be delivered in a hospital setting but does not exclude the provision of care in a nursing Home if appropriate.
Thank you for taking the time to reply and for directing me to the links regarding CC in Scotland. I had read NHS pages before but not relating specifically to Scotland. I have read them carefully and realise that I gave up too quickly and feel spurred into action again. As I mentioned above I will start tomorrow with the home's GP's and will blog my results and let readers know how I get on.
Please put up a fight with whomever will listen, as you can see by a new blog there is no places left in care homes, how long will he be in a hospital and the place he has now will be gone, point of interest? Hospitasl do not have the staff numbers to watch over your husband tell them so! tell them it is not the appropriate place to dump your Husband until a care home becomes available, and you have taken care of that part of the problem for them all you need now is their support financially. Your still supposed to have a choice in life? Good luck call them everyday don't give up
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Continuing Health Care - Applications and Issues
Continuing Care
Question for UK PSP patients and care givers
