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NHS continuing care


Registered User
May 25, 2014
How can someone with severe dementia and very limited cognitive 'behaviour' and only able to communicate the need for the toilet sometimes, or the fact they are cold be judged as being psychologically OK ? You can't communicate with that person, that person cannot verbally communicate and relies on physical prompts for tasks be assessed psychologically as OK? And also please tell me how someone having met my mother for 3 maximum 4 minutes as she was finishing her jelly and custard (she probably though no on knew hadn't eaten since the previous lunchtime) become an expert on my mother's condition and behaviour she said she had observed my mother herself - amazing this person must be an incredible expert?

Because my mother doesn't eat the covert Epilim tablets were a non success so even though apparently it's more expensive and Chiddingfold surgery didn't like the extra cost for the liquid Epilim and also by the way didn't like to spend the money on nutritional foods as my mother's weight dropped form 60 plus kilos in December to 47 in February as her BMI was still a good 19 - her BMI is now 18 and she has lost a further 4 kilos now they could well prescribe some nutritional drinks, too little too late. As for the liquid Epilim it was changed after myself and the home re contacted Dr. Watts for the liquid form - the woman from the NHS CCG was insistent that in her food would be a better idea - even though she doesn't eat much if at all - she said then she had to be 'monitored' to make sure she did eat all the food - for God's sake.

Yes I expect that if all of us at her age especially but not necessarily so, had lost all that weight (she hardly moves now as she is very weak) her behaviour will change - buy hey that's OK isn't it. Phew so long as she continues to not eat or realise she's thirsty and/or hungry then she's fit and well according to the NHS. God help us all. When I said if the NHS stopped funding and it went to social services it would necessitate the sale of this home as without Ma's money the utility bills wouldn't get paid as I am on income support - and she would therefore have to move from the home I really upset the apple cart. Because my mother is suffering from malnutrition and extreme quick weight loss she is likely to lose NHS funding. What happens if she is then bed bound and unable to eat and drink do they then withdraw funding again as her 'behaviour's aren't what they were ?

Oh and the drug olanazapine forbidden by NICE and the NHS especially for those with vascular dementia and a history of TIAs (and seizures) like my mother is OK according to the NHS person - really? Perhaps she should do some homework first. The woman from social services hadn't met my mother either - I must admit being a suspicious old cow that it is amazing that yet anther review after her initially being granted NHS continuing care takes place with the two decision makers not having met her at all (as the others are on leave) no sorry 3/4 minutes she met her for talk about snap judgement eh? This was the third review with th NHS CHC or CCG - first one February 2nd. delayed from earlier because of Christmas and New Year and then a norovirus outbreak, decision letter received March 7th. and continuing care granted , another review May 12th., and then this last one June 29th. as my mother was judged 'borderline' on May 12th. maybe because the home was not keeping accurate or even any records it seems of some incidents. Also re medication someone is not telling the truth one minute she hasn't been taking the Epilim etc. for days but her drugs chart shows she did ? When I brought up the fact that this and incidennts did not appear to the NHS person and had indentified on one specifc day that was a load of nonsense she gave me a pained expression and i was told well they can only go by what the home reports. So my 'reporting' of things is obvoulsy an exaggerated pack of lies. Like last year whne I was desperatley tryin to get help with her behaviour from the mental health team et al - it was only when she went into respite care In October that they saw what she was like, and guess what the home (another one) with all their 24/7 staff couldn't cope with her.

I find this whole thing disgusting, and it makes me feel very stupid when a few years ago I defended the NHS and GPs against a private company who wanted to build a nursing home come hospital in Cranleigh - what an idiot I was (again!). So amazingly as her ability to communicate anything, recognise even by voice anyone and is wasting away she no longer needs medical care, but then she doesn't need psychological or psychiatric care either - so tell me someone what is dementia is it a temporary visitation by some sort of alien life form of demonic possession because it doesn't seem to 'fit' within the NHS's responsibility at all.


Registered User
Apr 6, 2011
North Manchester
Epilim is a crushable form of sodium valporate and can therefore be reduced to a very small amount of powder and mixed with a spoonful of jam.

Be careful once you take it out of the foil as it is extremely deliquescent, this also means that once crushed it should be mixed with the food straight away.

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