Continuing Health Care - Preparing to fight PCT's decision

pixelchick10

Thanks Monkeyspanner so much for your advice and support, yes we are in England. And they were definitely downplaying her condition in the meeting. The nurse carrying out the assessment was the 'discharge nurse' which IMHO says it all. They definitely rushed through the assessment, and we only got a chance to interject if we really pushed. It all went over the head of my dad - I was better prepared but still not as prepared as I might have been, in retrospect - despite spending all last weekend combing this message boards! We can definitely push to raise continence to a 'high' and can argue the case for nutrition being a high too. Re altered states of consciousness I have since read that patients with vascular dementia suffer from this - as they get lots of 'mini strokes' - but didn't know this for the meeting so she was scored 'no needs'. Doesn't the fact she has 20% heart function have any bearing on the case at all? Obviously an unstable condition and needs careful monitoring as she is at high risk of further heart attacks and strokes. They didn't seem to think it did. Surely it means (a la Coughlan case, and the NHS guidelines for continuing care) that she has a 'health need' and all her requirements for care/accommodation stem from this health need. They are not ancillary. You're so right - if they gave us a verbal 'no' then they don't seem to be giving our input any consideration. We are going to go in and look at the hospital records in person - that way crucial documents can't go missing. Do you know how many appeals we can go through with the PCT? My dad went in today and he said mum didn't look good - slumped in the bed and hardly said a word - it makes me so cross that they are trying to say she doesn't have a health need - she is seriously sick and I really don't know how long she will be with us. And we're having to fight over all this - when we should be spending time with her.

margaretclare

monkeyspanner wrote: »

There would be someone on duty 24/7 but many would not be staffed up 24/7 to provide care which in this case would include using a hoist to lift a patient. Most care homes now are very specific about the residents they can and cannot take.

There would be night staff, but they wouldn't be able to do the things that are done in hospital, that was what I was trying to express - not very successfully.

Yes, mini-strokes, or transient ischaemic attacks (TIAs), are very common, can occur at any time even in sleep, and they do result in more and more brain tissue being lost. Think of the heart and circulation as being one system - the heart like a pump in your central heating system at home, the arteries carrying vital oxygenated blood to all the parts that need it, including the heart and brain, and the veins carrying blood back to be replenished with oxygen. 20% heart function means that this system is only working at 20% capacity!!

Your Mum's nutritional needs are important and it is vital for her to be kept hydrated. Dehydration is an extremely common problem. When you feel thirsty, you are already dehydrated. Athletes know this, that's why you see them carrying their water-bottles with them wherever they go. Many older people are not in the habit of drinking enough, they weren't brought up that way. A cup of tea - yes, but they often don't think of drinking water as a matter of course. In hospital it is even more crucial than in normal health.

If she is completely incontinent, on a catheter and also incontinent of faeces, obviously her continence needs are 'high'! How on earth could anyone argue otherwise? There will be a huge risk of infection in that area of the body, plus the irritation and discomfort. Having an indwelling catheter feels like sitting on a golf-ball.

pixelchick10

Thanks margaretclare for your insight and useful comments ...she is malnourished and the hospital's own records (which i sneeked a peak at when I was last visiting) show she only eats a couple of spoonfuls of food at meal times - we believe her 'must' score (the malnutrition screening tool) is at least a 3 or a 4 (has a mid upperarm circumference of 23cm, compared with 29cm exactly 2 months ago). Thanks for your comments about the catheter/continence too - that was my feeling but useful to have someone else to confirm this! She's also not good at articulating her needs clearly and consistently - according to the ward sister she will sit in her own faeces and they have to anticipate that she needs cleaning up. And for communication she only got a 'moderate' ... wondering if I can argue case for this to be a 'high' too ... She definitely needs a hoist, even to sit out in a chair, so this would concern me in a nursing home if they didn't have the right staff on duty 24/7 - makes me wonder if it would be the right place for her even if we can win our battle over funding? This is all a real minefield isn't it - and they do their best to avoid paying out.

realshannon

While I am still waiting for copies of paperwork from the hospital, the complaints dept have already kindly told me in writing that my MIL didnt get a CHC assessment this time (whilst in hospital before discharge - which was part of my complaint, why not?) or a dementia assessment, although she had one the year before when she was admitted after another fall and had a dementia score of 15/30, wouldnt you think they would do this process again, as she is now 91 - its a joke. anyway, can someone advise on, as I am waiting and getting ready to sock them for an appeal on CHC, if, for example, MIL on the day of the checklist or assessment is having a good day, it happens with vascular dementia, are they meant to assess just on that day or take into account the average health condition, if you follow? Good day or bad day - unfortuantely you cant know beforehand which she is going to have but some days she chats lucidly (albeit has no idea where she is or what day etc) but others is just slumped and presume this is ASC as there is no rousing her. It would seem unfair if they judge her health on a good day but dont take into account the mainly bad days she has. any thoughts please? I am sure it is in the framework somewhere! thanks

pixelchick10

Realshannon - they told me it was a snapshot of the patient's condition on that day ... as u say with vascular dementia they have good and bad days. Although my mother seems to be slumped more often than not ....Interested in your comment about Altered States of Consciousness - what is this exactly and how does it impact on those with dementia? My mum was scored ' no needs' but the discharge nurse skated over this when carrying out the assessment for CHC funding.

monkeyspanner

realshannon and pixelchick
The assessment should take into account medical history. For example a patient with a history of falls should have this taken into account on mobility.

Altered states of consiousness can be many things but typically dislacement in place or time is common. e.g. not being able to say where they are or thinking their parents will be collecting them soon. Try to get the assessor to ask more searching questions than "what day is it dear" or "who is the prime minister" patients may well know what day it is by the activity they just did and have just seen the PM on TV. Also the assessor may point to you and say "do you know who this is?" and then accept the answer "yes" when they should be looking for a name and relationship. (yes I have witnessed that scenario!)

One of the residents at my MIL's care home managed to get outside unaccompanied one day and rang the care home doorbell to ask for directions to her house. This showed a number of problems with both memory and recognition of their current situation.

Of course it can be more extreme like taking on a different personality or exhibiting violent or inappropriate behavior. (a kind way of saying sexualised behaviour).

margaretclare

Pixelchick, thanks for your kind remarks. Some of what I write about this kind of topic is based on my past nursing career, some of it is based on personal experience. My first husband had mini-strokes, TIAs, but because it was all part of a general cardiovascular degeneration, from his first 'coronary' aged 38 to his death aged 58, he didn't live long enough to develop ischaemic dementia. For which, thankfully, he was spared. But I know other people who've had this. Regarding catheters, I know from experience!! A couple of years ago I had some gynae surgery and I had to insist that the catheter was removed before thinking of getting up and sitting in a chair. 'Get up and we'll make your bed'. 'Catheter out first, please.' 'Oh, it might have to stay in longer - some of the ladies on this ward have them in for days' and that was true, you'd see them walking about carrying their bags of urine like a handbag. 'Have you looked in my notes to see when it is to come out?' 'No, we don't need to, we're making beds now'. 'Yes you do need to, I'm not moving until you do'. They came back a few minutes later saying 'It can come out 24 hours after surgery'. 'Good, that's now, take it out please'.

Some of the things that are said are so common-sense you'd hardly think it needs a degree in nursing! Infection as well, from incontinence. You get an infection around that catheter and before you know it you're in kidney failure and the major organs start shutting down. An even more important reason for avoiding dehydration is if you're on a catheter.

As a behavioural sciences graduate I also know about altered states of consciousness, and I am surprised this isn't more widely understood. Interesting, about who is the current Prime Minister. My late MIL would go off into a long rant all about Callaghan but that was when Margaret Thatcher was PM! When my first husband, her only son, used to visit her, she would rant at him about how he had 'interfered with her'. Eventually, from talking to older relatives, we gleaned that she mistook him for her late FIL, his grandfather, who had apparently sexually-harassed her as a young bride.

beaujolais-nouveau

margaretclare wrote: »

Infection as well, from incontinence. You get an infection around that catheter and before you know it you're in kidney failure and the major organs start shutting down.

Could I ask, please, what it means when there is protein in the urine?

beaujolais-nouveau

Just to say that I am now at the stage of asking the SHA to arrange an independent review panel to consider the decision made by the Somerset Primary Care Trust last month.

In an entire year, that PCT has been unable to produce even one document - eg the needs portrayal document or the DST - completed accurately. I know now, from the correspondence in the case file for the appeal panel, that the DST was completed without reference to my mother's medical records at all - they drew only on the care home records (where she was for three months). They have been almost unbelievably dishonest and irresponsible.

monkeyspanner

beaujolais-nouveau wrote: »

Could I ask, please, what it means when there is protein in the urine?

The most obvious answer is kidney function but this can be the result of urinary infection or blood in the urine or heart failure.

However a quick search gave a list of 54 medical conditions which can give high protein readings in the urine.