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Aug 29 11 3:32 PM

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Hi Everyone

I am new to the forum, but not new to trying to get CHC funding for my mother who is 98 years old.
I live in Cumbria in the Lake District and often feel so isolated in my battle for my mum. The Age related charities were absolutely useless.

We (my husband who I have appointed as my advocate) feel that there is no one to talk to and long for the sound of a human voice. I think your forum is great and the information the best that I have seen. I am wondering if any members of this forum also live in Cumbria, as we  could use some in-depth help.

I'll try and keep this short.

1) My 98 year old mother has end stage dementia (which the MDT members say is non diagnostic). Does anyone have any experience of being told this? I know that dementia is caused by a host of health problems, but surely in itself it is a health need. I believe it could be diagnosed by a brain scan, but as one member of the MDT said "No doctor would sanction a brain scan on a 98 year old woman."

2) Mother was originally at home having 3 lots of care from SServices. That was not working due to a huge amount af falls.The ambulance service would not come out to pick her up (one female carer could not do this) as they said that 'Mother never hurt herself.' In February she fell again breaking her leg (fibula) and I had to dial 999 to get her to hospital. She had a pot on her leg and was transferred to Westmoreland General Hospital.

3) Mother is also doubly incontinent, could not feed herself properly, was a danger to herself, was disorientated in time, person and place, did not recognise anyone, and became dysphasic and unable to communicate any needs. She was withdrawn from all aspects of her care needs, and messed her bed and clother with urine and faeces. There is much more to this, but the carers felt that they could no longer cope.

4) In a way, it was a relief when she had to go into hospital, because it gave us a reason to feel that maybe she was ready for a Care Home.

5) After two weeks in hospital, they did a Checklist (never invited me to be present). I looked up the process of funding on the web and asked for a review as I did not agree with their ratings of 8 C's and 3 B's.

6) We had the Checklist review which was a copy of the first review. The only difference was, that I was present with my hubby. The result was No Change.

7) I told them that we disagreed with their decision and eventually they held a 3rd Checklist meeting. This time, with my evidence (hard won and stressful to get) they decided mother could go through to a full MDT/DST.

8) The first MDT was cancelled on the day. The NHS set another day.

9) The MDT/DST went ahead and we had lots of input (they had none), but the Domain scores seemd reasonable (apart from continence which they insisted was not double)  Ha ha ha! Section 12 was not completed as the FGuidlines state it should be.No assessments were put into the assessment section. I said I would appeal against the decision not to give mother funding.

10) The NHS set a new date for a review of the MDT/DST and this time I had evidence of recurrant UTI's which put the continence up to a moderate. All other domain scores stayed the same.

She now had 1 severe, 3 highs, 3 moderates, 3 lows and 2 no needs. She was refused funding. I said I would appeal. I wrote to the Chief Executive of Cumbria PCT and also asked them to outine their appeals proceedure - which they did. One good thing about this lengthy process is: that they wanted my mother out of hospital or they would be fined for bed-blocking. So, they decided to pay her nursing home fees (it had to be a home of their choice - run down) until the appeals proceedure was over. These are £810 -70 per week. Phew!!!
Mother has now been in this nursing home for 4 months.

So, in a way, we are in a position of strength because we have not had to sell mother's house yet.

Last week we went to the 3rd MDT which was supposed to be our Appeal hearing. What a cruel farce it was. These people (two of them, plus one lady from a LA) altered my mother's Domain score 'Psychological and Emotional' from a HIGH to a NO NEEDS. They said they agreed that she was withdrawn from all attempts to engage in care activities and daily living, but that it was Cognitive and not psychological. Therefore it was a
 No Needs. They had no new evidence. The nursing notes which the LA person and another woman from Wigton had with them, had notes missing - very convenient. (I had copies handwritten of the missing notes).

This Appeal/MDT/DST was only concerning the time mother was in hospital from the 1st checklist to the previous MDT?DST. She has been in this home for 4 months and things have deteriorated since then. They were not interested in how she was NOW. This meeting was retrospective.

We were asked to leave and go home before these three useless, deceptive people made a recommendation. We know in advance what it will be. I read them the riot act and said I would be complaining once more to Cumbria PCT, then taking matters to the SHA and then to the ombudsman. We mentioned Coughlan, the 1948 act, the difference between social care and CHC care. It was like talking to a brick wall. No, worse.

The last MDT also used the word 'It is none PRESCRIPTIVE' quite a lot - any thoughts on this?

Does anyone here have any thoughts about this 3rd Domain which is Psychological and Emotional? Your ideas would be very welcome. Also if anyone is from Cumbria, I would love to talk to them and share experiences. Loneliness in this fight for justice is probably the worst thing of all.

Thank you
Jenny (Amadeus)

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#1 [url]

Aug 29 11 4:09 PM

Jenny sorry to hear your story. Sadly this is the way the PCT's are going now - down scoring all previous Decision Support Tool ' scores '. This has been done to my Mother's DST done in 2007 - they have down scored her Medications Domain from High to Low in their 2010 DST. They do seem to drone on about the ' intensity ' now as well ? You can inform them of the ' Law ' etc but they just ignore you.

My Mother has a Severe in Cognition so we say that this will affect nearly every other Domain there is !! However they do not agree with us. We say if she has nil Cognitive abilities how can they even begin to assess her P+E state ?

Anyway hope someone else can help you

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#2 [url]

Aug 30 11 1:01 PM

Just wanted to say hello and that I understand your problems only too well. 
This may not be the busiest of sites but I think it's probably the best for seriously good advice.
I will leave it to others to give that to you - I just send you my best wishes and a note to say STAY STRONG and don't be afraid to talk on this forum.

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#3 [url]

Aug 30 11 7:00 PM

Thanks you both for your response.

Yes, staying strong is important, yet strangly I feel to be near the end of the process rather than at the beginnning. I think that I must be psychologically impaired  - ha ha.

My husband and I are good at arguing with these flawed MDT's, but after 6 of these meetings and getting nowhere (but maybe we are?) the adrenaline rush is powerful. The problems arise a few days after the conflict when we lose sleep and feel like emigrating to Alaska - no make that Italy - it's warmer.

We wrote to the Chief Executive of Cumbria PCT today and also to the general complaints department, so it will be interesting to see what evil plan they hatch next. At least the NHS are funding my mother in her nursing home until the appeals process is exhausted. I think when we set out on this battle, that we hoped to exhaust them, but it so easily becomes the 'apellants' (that is what I am called by them) who become exhausted.

Just been to see mother today - 98 years - and it enrages me as to how the NHS can treat people the way they do. I am so in heart with you all on this forum. I do understand how everyone must feel. It is an unknown journey, with a destination that is hidden from us. However, we do have a map, and a plan, and thank GOD some wondeful people who guide us hopefully to a victorious end. Yes, let's stay strong and feel that we are in this together. I would truly appreciate any more help anyone can give.


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#4 [url]

Mar 7 17 12:20 PM

Any further along??

Hi, I'm new here, similar situation, lonely and can't find anyone local to speak to.  Just wanted to say Good Luck and ask if you are any further along in the fight?

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