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Hello everyone - Page 8 - Carers UK Forum

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Hi Henrietta

Typed a really long reply to you. Clicked on "preview" and lost the lot! Tried clicking back but it had gone.

Too tired to type it all again now (slept even worse last night - 1 hour!). I'd copied some info about CHC for you as well, in case you haven't had full assessment yet (because of what you were saying about your dad's pain fluctuating). Can't believe I lost it all :(

Just thought, I bet if I click on paste, the CHC info will still be there...

As part of a full assessment for Continuing Care the assessors look at the nature, intensity, complexity and unpredictability of your relative’s needs – and this is where the problems often start. A common argument used by NHS assessors to deny funding is to say that someone’s needs are stable and predictable, and therefore they’re not eligible for Continuing Care funding.

However, this argument is flawed.

The official guidelines the NHS has to follow when assessing for Continuing Care are embodied in the National Framework for NHS Continuing Healthcare and NHS funded Care (2012), which describes ‘unpredictability’ as:

“…the degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the person’s health if adequate and timely care is not provided. Someone with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.” (page 16, paragraph 35)

Assessors are often quick to latch on to the phrase “rapidly deteriorating condition” when looking at unpredictability. However, a need can also be considered unpredictable if it requires daily monitoring (“adequate and timely care”).


It was still there! Have still lost everything else I typed though.

Your dad's pain should be assessed as fluctuating and unstable. It should be assessed as unpredictable as well.

Tell them about confusion side effect he suffers with when on cocktail of pain meds, including strong opiates. All of this counts. Make sure they know the pain is excruciating (need to know severity) and even strong opiates don't take it away. Needs supervision when in pain and confused. At risk of harm if not supervised and monitored at those times.

Don't know if you've already had full assessment though? If not you probably know all of the above anyway. If you haven't had assessment yet, it's a really good idea to familiarise yourself with the guidelines and the sections of the form (I'm probably stating the obvious here and again, you've probably already done exactly that). It certainly helped me to be prepared. Arm yourself with lots of evidence too. I had a big folder of Mum's medical documents for them to photocopy.

Can't re-type the rest of what I said. Sorry about that. Exhausted. Must get to bed early tonight.

Thank you for your advice about carer and for filling me in on the pain meds.

I'm going to highlight and copy this now, in case I lose it again, when I click on submit!
Hi Blue Mermaid
Thanks received all your info. Thanks for the advice and no I haven't had the assessment yet.
I have indeed printed off the assessment form and made some preliminary notes for each section. What I need to do in the next couple of days is putting it together and pulling some examples into the picture, I'm not really sure what documents I can produce, other than times and dates of falls approx, plus again rough summary of numerous medication changes and lengthy history of how back pain comes and goes but increasingly bad.
I was wondering if it would be a good idea to type up some notes with examples so she can take it away with her? What do you think? Also referrals underway in case other people forget to mention them.
When you mention list of documents- how about discharge summaries from a few years back- 2009? and maybe failed discharge from April 2015. Also rehab discharge from 2012.
Hi Henrietta

So sorry for delay. I'm probably too late to comment about your preparations for the assessment now but I'll reply, just in case you still haven't had it yet.

I included relevant letters from Mum's various neurologists, her spinal MRI scan report, (that I managed to get hold of through her GP), a relevant email between her Parkinson's nurse and myself and a letter from her previous Parkinson's nurse, discharge letters from hospital and previous rehab, (same as you), dietician's letter, list of drugs/drug regime, referral letter from neurologist for specialised treatment for recently diagnosed dystonia. Oh yes and a printed explanation of a medical term used in recent neurologists letter. Can't think of anything else.

Sounds like you are doing all the right things and I think typing up notes with examples for them to take away is a great idea.

When I phoned up the CHC team before the decision was made, I asked them to check that both sides of the neurologist's letters had been photocopied. One of them was Mum's Parkinson's diagnoses letter from 2009. I included it, as it was so detailed about her symptoms. The woman on the phone was rather snooty and said they are only concerned with now and how she is at rehab. She said 2009 was too long ago. The social worker and the assessor both knew that some of the documents weren't from this year and neither of them said they weren't relevant, (although I did read beforehand that they are only interested in how things are right now. I took no notice though and included everything I thought was relevant to Mum's case). The woman made out they weren't very interested in my documents and were going by what the nurses said at rehab. She said they'd given plenty of detail. As the social worker said at the meeting though, it's me, Mum's carer, who really knows how things are.

If you've already had the assessment, I hope it went well. Also, hope things aren't too bad with your dad and the infection is improving and that carers are sticking to the care plan more.
PS Mum still in rehab. Not heard anything since I phoned CHC worker last Thursday. Maybe we'll hear something tomorrow.
PPS At the meeting, assessor asked me if I had documents from paramedics from each time Mum was taken to A&E before she was admitted. They did give us a copy each time but do you think I could find them? I still don't know what I've done with them. So, if you have your dad's, you could include those.
Hi
Thanks I only have a couple of recent ones, I know the GP has walked of with them twice and the out of hours Dr.
Annoying when they do that.

Neurologist kept a letter I showed him from other neurologist recently. I emailed his secretary about a week later and asked if she could send it back to me. She did.
Well I have copied every discharge letter and hospital letter and paramedic report that I can lay my hands on- I can't do anymore....
Well- no decision until they have more info from professionals.
This is my best hope that Dad falls in this category within the framework

"one domain recorded as severe, together with needs in a number of other domains,"

So far from what I can make out he has 3 or 4 lows, one high and one potentially "severe" if professionals categorise it this way rather than high.
As you say, you've done everything possible. Well done.

I'll be keeping my fingers crossed for you.
80 posts