NHS Funded Registered Nursing Care

[noelphobic]

My mum was in an EMI care home for 12 months before she fell and broke her hip. After spending some time in hospital she has now been in a nursing home for about a month. I asked the Social Worker what band she had been assessed as for Nursing Care and he was unable to tell me as 'it was nothing to do with him'. My sister phoned the PCT to ask for a copy of the assessment and they got someone to phone her back. The person who phoned her back basically went through it on the phone starting off by telling her that it wasn't an assessment but a determination. She didn't really give her any details that were personal to my mum, just the criteria used which we knew about anyway. My sister phoned her back and asked her for a copy of the assessment or 'determination' which I thought would be a straightfoward request. She replied by asking whether there was an issue with it and saying that 'she would see what she could do'. She also said that as my mum was Local Authority Funded then it wouldn't really matter, but my mum is actually on deferred funding pending the sale of her property. We don't necessarily want to dispute the banding she has been placed in, we just want the paperwork. Why are some 'professionals' so obstructive. You don't necessarily start of by wanting to complain but by the time they've messed you about you defintely do!

 

[Brucie]

Why are some 'professionals' so obstructive

Jokingly, some possible reasons...

• I don't know the answer to your question but must sound competent so will give the easiest reply, a negative
• Look, I don't consider I get paid enough in this job to do more than just turn up and then go home; you are interfering in the natural course of things
• I agree with what you want but the people above me have set down such tight guidelines that I have to sound unhelpful
• We're the professionals so don't question our decisions, it only makes more work for us

 

[daughter]

Can I add:

• I'm worried that I've/we've screwed up so I want to make sure you're not complaining before I give you anything.

P.S. In order to keep our egos over-inflated we will change our jargon words every so often to make it look like we know what we're talking about but you don't!

noelphobic - keep on asking for what should surely be yours!

 

[noelphobic]

The plot thickens!

We had decided to ask the nursing home for a copy of the assessment as it would hopefully save a lot of hassle and we were only going to go back to the PCT if we couldn't get a copy from the nursing home for any reason. Then the PCT rang my sister back to arrange a meeting. She said that if she just sent a copy of the determination that it wouldn't mean much in isolation. So we are going to a meeting!

I think maybe she added two and two together and made five - when my sister said 'could I please have a copy of the assessment', she heard 'I want a copy of the assessment so I can appeal and get her on the higher band or get fully funded NHS continuing care'. Or maybe she heard 'you've done an assessment/determination without our input as the people who know her best'. It will be interesting to see what happens at our meeting on Wednesday.

 

[Michael E]

Do not quite follow it all but it seems to me you need to see a copy of the assessment BEFORE the meeting on Wednesday... even if only a few hours. Can they not put a copy in the post tomorrow? Then you can ask relevant questions in a considered way...
Michael

 

[noelphobic]

Michael, this all started BECAUSE we asked for a copy of the assessment and the PCT have instigated the meeting! I would have thought it was quite common for relatives to ask for a copy of the assessment/determination but it doesn't seem to be getting treated that way.

Before we found a place for my mother in the first home she went to we went to the local CSCI offices to ask to see their reports. They seemed rather surprised by this request and told us we could find the reports on the internet. When my sister asked what we were supposed to do if we didn't have a computer we were told that we could use the computer in the public library. I don't know what we were supposed to do if we didn't know how to use a computer - go on a course?!! It seems to me that what starts off as a straightforward request becomes complicated by the very people who are supposed to facilitate it!

I think the PCT were under the impression that my mum was Local Authority funding and if that was the case then it would be irrelevant which banding she was on. However she is only Local Authority funded until such time as her property is sold and is therefore accruing a debt to them. Therefore we do have an interest in what her banding is. However, all we have asked for is a copy of the assessment/determination.

If I'd known my mum was going to go into care I would have studied to be a Philadelphia lawyer as that is definitely what you need to be to successfully negotiate 'the system'.

 

[Brucie]

Michael

Can they not put a copy in the post tomorrow?

this would be akin to asking the enemy to kindly accept a copy of our battle plans to help them in the forthcoming melee

 

[Michael E]

Ouch - difficult - the only thing that is different now is that they want a meeting to 'explain' the report... It would seem sensible to see the report before the meeting so
that you have an opportunity to use the meeting in an efficient and sensible way...

Otherwise how can you have a meeting about a document you have not seen?

Listen I can be really wrong about a lot of things but I would be very suspicious about being invited to a meeting about a document I have never seen.... but everybody else at the meeting has..........

Michael

 

[noelphobic]

The whole thing seems really bizarre. All we wanted them to do anyway was put a copy of the report in the post. I don't understand the purpose of the meeting unless they are pre-empting any possible appeal against the banding or request for continuing NHS care. I could ask the home for a copy of the report as they should have one but then what is the point of the meeting?

 

[noelphobic]

Meeting with PCT

Well, we had our meeting this morning. At first it looked as though all we were getting were some general handouts explaining the criteria for the different bands. We already knew this anyway so it was pointless. Then she produced the 'determination' and read it out to us. However, no photocopy of this appeared to be forthcoming until we asked. She then said that they had had a debate about whether they should give us a copy of this as they weren't sure if my mum would have been able to give her consent to us having this information. I had anticipated this as I had read somewhere that they can try to use the Data Protection Act to avoid giving you copies of anything. It would have been ridiculous to do so, given the fact that she had read it all out to us anyway and if we had wanted to we could have made notes.

Anyway, we didn't have to argue the point as she gave us the copy. Therefore if we decide to appeal for her to go on a higher band and/or for continuing NHS care then at least we have something in black and white to show what the banding was based on. According to the 'determination' my mum has Parkinsons, Alzheimers and epilepsy. We have never been told that she has Alzheimers and I think it more likely that she has Lewy Bodies Dementia. Also she doesn't have epilepsy even though she is on Epilon - something else we are trying to sort out! I don't know if there is any point in trying to get Continuing NHS care if she is on the middle band. Would it be better to try and get her on the higher band first? Or am I flogging a dead horse? Any advice would be appreciated!

 

[Sandy]

Hi noelphobic,

You might want to take a look at an Dept of Health memo (in PDF format) asking colleagues to make sure that people in the higher band of nursing costs were also considerd for NHS Contunuing care:

http://www.dh.gov.uk/assetRoot/04/12/56/49/04125649.pdf

The letter seems to indicate that the assessment procedures are quite different for the two schemes. So in that sense, getting a determination for the higher rate of nursing costs would seem to make no difference.

The best thing to do is to get a copy of the Primary Care Trust's guidelines for Continung Care and see what it says. Of course, it will be down to the 'professionals' to make the actual assessments, but it gives you an idea of what criteria they'd be using. Here is an example from my local Health Authorirty (dating from 2003):

http://www.nscsha.nhs.uk/resources/pdf/public_health/contcare/cont_care_crit_sha0403.pdf

The Dept for Health page on Continuing Care might also be useful:

http://www.dh.gov.uk/PolicyAndGuidance/OrganisationPolicy/IntegratedCare/ContinuingCarePolicy/fs/en

Hope this helps.

Take care,

Sandy

 

[noelphobic]

Hi Sandy

Thanks for that information which looks as though it could be very useful. Do you know how I could find out the local PCT criteria? I know the most obvious way would be to ask the PCT and I should have asked at the meeting today. However, it seemed perfectly straightforward to ask for a copy of the 'determination' but they made that complicated. How did you find out your local PCT's criteria, just through Google or something like that?

I would imagine that in some ways it would make more sense to try to get my mum put on the higher band for nursing care before trying to get continuing NHS care. Her review is due in 3 months so can hopefully be present then. There were some things I disagreed with on the present determination, one being the implication that her communication skills were good. However, I am not sure if that would make any difference to the banding.

 

[daughter]

Hi noelphobic,

If your Health Authority is Cheshire and Merseyside, you could try:

http://www.cmha.nhs.uk/continuing.htm

Best wishes,

 

[Sandy]

Hi noelphobic and Hazel,

I think Hazel (well done ) has answerred the question re: an individual PCT's policy. My in-laws live in Essex (Colchester) and I could not find that policy using Google or searching various web site. In the end, I asked for a copy via email and they posted me a copy - it wasn't on the internet.

I know the Dept for Health is trying to put togther one definition for the entire country (I guess I mean England in this case). Most of the local definitions seem to be based on the same factors: unstable medical conditions, need for continuous medical supervision, need for specialist support, terminal illness, etc.

I am not in any way an expert in this area, but in general, when dealing with bureauracy and assessments, it pays to put your thoughts in writing. If you do have any areas of disagreement with the current determination, I would certainly document them now (in the form of a letter to the relevant authority) with a view to making sure these area are very carefully explored at the next review in three months time.

Take care,

Sandy

 

[noelphobic]

Thanks Hazel and Sandy

I started reading it and felt quite disconsolate until I read the following as something that needed to be taken into account

Evidence of dementia, impaired capacity, mental ill health, confusion, challenging behaviour and complex needs which cannot be managed in the community and requires care

I would have thought that would be true of anyone with dementia. However, by itself it's probably not enough. They also mention 'brittle Parkinson's' although I've only ever heard the term brittle used in relation to diabetes before and thought it was an outdated term.

I had emailed the PCT before I got Hazel's reply. I hope the request doesn't go to the lady we met today or she'll want another meeting!