Questions about NHS Continuing Healthcare

[MJK]

Hello,
I am just starting to look into the process of requesting an assessment for NHS Continuing Healthcare funding for my Mum who is self-funding. Before I get too bogged down in the reading (I've bookmarked and skimmed through various docs off here, Age Concern and DoH websites), I just wanted to ask a few questions.

[A bit of background: My mother has AD and is currently in a Care Home which also provides nursing care, although she is under the dementia category at present. She has been there approx 18 months and has deteriorated a lot in that time. She has extreme difficulty communicating and cannot answer questions or hold a conversation. She need help with all personal care. She is doubly incontinent. She is getting more "difficult" - aggressive, gets distressed a lot and argues with herself.Physically she is quite active and able.]

If she were to get NHS CHC funding, would they pay for her to stay in her current home (not the cheapest in the area but well towards the cheaper end of the market) or would she be forced to move wherever they chose? Or would they provide a set amount which we could top up?

I've been reading the Decision Support Tool used for assessing eligibility and understand that "Behaviour" is one of the key areas to prove a high degree of need. What sort of behaviour would they mean to achieve the highest "score"? I assume wandering, repetitiveness etc are fairly low down the scale, so does it mean physical aggression, verbal aggression, destructiveness or things I've not even thought of?!

I believe I have to initially write to the PCT to request an assessment; do I write to the PCT for the area in which her current home is located? (She moved out of the area where she lived when she entered the home).

As far as I know she has never been assessed for NHS CHC.

Is there any reason her current home would be against me trying to get NHS funding - don't want to upset the status quo, at the moment things are generally ok where she is.

For those of you who have been successful in ontaining CHC funding, did you do it yourself or did you have legal backing?

Sorry if my questions are very basic, I literally only started thinking about this two days ago. I realise that the process is very slow and difficult, but just feel I ought to make a start because if she's not meeting the criteria yet, she may well do in the future and at least we'll be a bit further along in the process.

Thanks for any advice or experiences - I know I've got a lot to get my head around!

 

[BeckyJan]

Hello:
Yes I am one who won the 1st appeal for continuing care. The first application was put in by Assess.Ward nurses who, on reflection, had little experience.

As far as funding, I doubt they would insist on moving homes purely on cost, unless the home was excessively high. No with CC you do not top up. (That may apply when SocialServices are funding).

The appeal for me was not over difficult, except that because of initial refusal I made sure I knew what it was all about. The homework I did made it arduous. The re assessment itself was long winded but thorough.

My husband's behavioural problems proved High/Moderate, because he was wandering, shouting and generally very very difficult especially at night. I found the criteria rested much on 'unpredictability' and 'high risk'. My husband also had major skin problems, he was high falls risk (falling something like 32 times in 3 months).

I hope your relationship with the NH is good. If so, ask them if they can request an assessment. My husband's NH Manager was extremely helpful. If not then it may be harder, but at least you can request an assessment from the PCT.

For starters, I have probably said enough. Good luck.
Jan

 

[Trying my best]

Hi there,

CC funding can be provided in ANY setting - my mother even managed to get it for a 24 hour home care package, which obviously works out more expensive. So I suspect that they are unlikely to move your mum if she is settled and her needs are being met where she is now. It does not provide a set amount - they simply provide/arrange/pay for the services that they believe the person needs.

Behaviour was important in my mum's assessment. She scored 'high' in this domain. She does wander (including a number of incidents where she got into very dangerous situations on motorways etc). And although a petite woman, she can verbally and phyically aggressive/violent towards anyone who attempts to help her with personal care issues. She screams, shouts, and makes (scarily detailed and gruesome!) verbal threats. She has also hit, bitten, kicked, thrown faeces, pulled hair and attempted to strangle carers in the past. We were specifically told that her behaviour is not 'severe' because it is a case of lashing out in response to what is happenning at that precise moment, as opposed to unprovoked, random acts of violence.

My mum also scored 'high' on psychological/emotional needs (as she is in a pretty much constant state of panic/fear/anxiety/anger/depression) and on communication (as she cannot reliably communicate anything, even about her basic needs).

But her highest score was in cognition (severe). She has no understanding of what is happenning to herself or anyone else (which in turn triggers the emotional roller coaster and the challenging behaviour) and does not know who anyone is, although she obviously feels much more comfortable with family than she does with outside carers.

Incidentally, although she is doubly incontinent, and throws faeces/gets it everywhere, they only gave her a 'moderate' score. It seems that people are only scored 'high' in this domain by our local PCT if they have special equipment (ie a stoma or catheter)... not certain on this though.

In my mum's case, the CPN actually requested/co-ordinated the assessment on my mum's behalf, after the consultant psychologist suggested that she might be eligible. This all happenned after an emergency respite stay, during which the full extent of my mum's care needs became apparent to the various health professionals involved.

Hope this helps!

 

[MJK]

Hi Jan,

Thanks so much for your reply. It's interesting to hear what level of needs your Dad had as it's quite hard to compare my Mum with people who have much greater physical needs but much leser mental ones. If she is to be eligible (in the near future anyway) it is likely to be more based on behaviour/psychological needs.

My main worry at the moment is that I don't want to make things any more difficult for my Mum e.g. her having to move, management of Home being annoyed. It's good to hear your Home's manager was supportive.

Were you able to get access to medical records, assessments etc without any problems? (We have an EPA, not an LPA).

Thanks again.

 

[Clive]

HI MJK

It is unlikely that the NHS would expect you to move mum because it is well documented that moving old people to a new place tends to do them harm. You can argue this if necessary.

We did not have any adverse reaction from the EMI Residential Home’s owner when we applied for NHS CC and they were mildly encouraging… though I don’t think there was any advantages to the Home so don’t expect them to go the extra mile to help.


In our case (which took a long time) I did not try to get access to medical records however I did see the assessment before it went before the panel. There were a number of points that I did not agree with and I made sure that these were put before the Panel in writing.

Like your mum, my mum had moved NHS PCT area. In our case we applied (correctly) to the PCT in which mum was now living. The PCT wrongly tried to convince me that I should apply to the PCT in which she had originally resided. The rules are that the PCT in which you live when the application is made pays.

It makes such a major difference to both family finances and your own peace of mind to have NHS CC granted that you should not hesitate in getting the application in.

I personally found that it helped me to say (and write) at every opportunity that mum had only been placed in an EMI Residential Home because her mental health had broken down so she was not safe.

Best wishes

Clive

 

[sue38]

Hi MJK,

You sound to be in a similar situation to us some 8 months ago. My dad is in a Care home without nursing. I understand that your mum's home does have nursing, but she is not in that section.

The problem we had and which you may have is how to get the ball rolling. My understanding is if you are in receipt of nursing care an assessment has to be carried out, but not otherwise.

You need to get someone to carry out the initial assessment which is done using the checklist. If you have the link to the DoH website you will see a link to the checklist.

You need someone to carry out the assessment, and this is normally the Social Worker, CPN or Community Matron linked to the GP.

My dad has just been granted CC and we have a meeting next month to ascertain whether he is in the correct place for his needs. We will strongly resisit a move, especially if we feel it is for monetary reasons.