Just reading EricaE's post made me realise that I had not told you all that Nigel has been turned down for funding, despite the fact that the District Nurses, Complex Care Nurse and Doctor and our Neurologist thought he would get it. He was classified as having 4 high domains and 4 moderate domains and 1 low domain, out of the 10 domains. I will appeal but I have not the energy for it just yet as the nights are more disturbed at present.
On a positive note we had a lovely week at Revitalise in Southampton and met up with old friends and made new ones. Nigel knows it there now and the staff know him so it works well and they really look after the carers: no washing or cooking for a whole week and a bell to push for help even at night, and a lovely evening meal out on our own chatting and eating without one eye on someone else!! Sadly Nigel did not want to stay up for any of the evening entertainment this time but after he was tucked up in bed I came back into the lounge and enjoyed it. I really noted how much he had deteriorated though especially when we had a trip to the zoo and they may have been cardboard cutouts for all the interest shown by him despite the fact that he loves animals. The Interactive Farm, however, went down much better and he enjoyed holding tiny chicks and little guinea pigs.
Back to reality now and trying to gather up enough energy to appeal.
Love AliBee x
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AliBee1
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It is disgraceful what people have to go through. Appeal. Could you get a letter from the Neurologist? Or whichever one might be most helpful?
Glad you had a nice break. I remember when you told us about last time. It does sound as though Nigel has gone down since then. Sorry to hear that. You need CHC funding and they know it!
Oh dear AliBee1 I have to say I am from London but I’m happy we’re not in England now it all seems so hard to get funding and all because of ignorance the PSP and CBD no one has ever heard of till you got it hey ? Monkey see monkey do !!!
Stupid lot they are and stupid is dangerous
Nigel was probably having one of his better days when they saw him don’t give up darlin I beg you make them feel ashamed of what they done refusing funding for such a demanding and debilitating condition I’m in Australia now thank God
Print them out a fact sheet on his condition and give it to them !
Thank you. Encouragement is so important. I would like to make them see sense. I might invite them to stay for a couple of days !! Glad that you are in Australia now and obviously enjoying it xx
So sorry to see that someone else is having the same battle with chc. I completely understand when you say that you haven’t the energy to battle. I’m the same at the minute, needing to save my energy to look after Pete not battle with these ignorant people. Good luck if you do appeal, take care x
Thank you. It is such an effort to keep one's loved one as conmfy and safe as possible but then it comes across that he does not have 'needs'. It is ironical xx
A total disgrace Ali but don't give up whatever you do it's just a crying shame that you have got to jump through more hoops to get what is deserved. I'm rooting for you both.
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