Continuing Healthcare Decision Support Tool amendments: June '16

I am due to attend a Decision Support Tool assessment next month. I myself am an retired Registered Nurse. When the nurse rang me to make the appointment last week she did everything she could to discourage me from attending saying it was not necessary etc. I played my cards very close to my chest & told her calmly ( twice ) '' I want to be there. My mother is severely demented & cannot speak for herself so I must be with her .'' I could tell she was not at all happy. At the end of the conversation I casually remarked '' Oh BTW I am a retired RGN.'' The silence was deafening!! After about 10 seconds I actually said '' Hello, are you still there ? '' She then said in a very clipped curt way '' Yes, yes, yes oh ok I will see you at the appointment. Goodbye''. She could not get off the phone quick enough. I am reading all that I can for this assessment to be well-versed but has anyone any advice or help please. I have also insisted that the manager of the home (who is completely on my side) is present at this appointment in the hope that between the two of us we will be able to deal with this woman. Many thanks.

Please can someone clarify this situation. While I was visiting my mother, I was asked by a nurse to discuss the findings of her 3 monthly Decision Support Tool (DST) assessment review. I had been present in both her previous reviews at the hospital. I asked why I was not invited to the review and was told that as it was a review my presence was not required and that the review had been carried out by the Deputy Ward manager. My mother has advanced dementia and Parkinson's Disease and does not have the faculties to make decisions for herself. I have POA on both financial and health and welfare for my mother. Does anybody know whether this review can be carried out without my prior knowledge and consent?

Please can you tell me where in the Care Act it states that an assessment for NHS Continuing Healthcare (CHC) should be carried out before a person is discharged from hospital. Any failure to do this is a breach of the Care Act.
NHS CHC assessment should be carried out when the individual is at their optimum. This is not always the case when in hospital? I am confused

Can someone please advise. I recently attended an assessment as support for a friend. The Multidisciplinary Team (MDT) met with us and gathered the evidence for each domain. The domains were not scored. I queried this and was told they were now done at a later stage by the MDT as previously it had led to much disagreement if the individual and their family were included. The completed Decision Support Tool and recommendation will then be sent to the individual for comment before going to the CCG for approval. Is this now the case? I thought the individual/representatives had the opportunity to comment on the scoring at the meeting, and their views to be recorded?

Hello.
My father in law is shortly to be assessed for eligibility of NHS Continuing Healthcare (he 'passed' the initial assessment 12 months ago) but it's not clear to me how an objective decision can/will be reached at the end of the second assessment.
The 'National Framework for NHS Continuing Healthcare' states that 'a need should not be marginalised just because it is successfully managed'. However, if a need is successfully managed via medication, care etc, how can you assess an underlying need? Do you consider the individuals behaviour prior to the medication/care?
Any advice would be greatly appreciated.

Yes that's the page, however I can't open 3 of the documents that are ms word. The others are fine in PDF format.

Hi, I am trying to obtain the 'user notes' that are mentioned in the DST. I can not open any of the documents on the government website that are in MS word form, they all open in gobbledegook. Is it my pc or is anyone else having the same problem?

Dee Dee, I'm afraid I don't have your expertise so any advice on what I should broach or how I should make them take notice and listen would be welcomed! I am just sick of vulnerable people suffering because of this 'wilful neglect' :( If we don't fight for them who will? Not the government unless we give them no choice and expose them. I don't trust anyone anymore and even the politicians will only help if it makes them look good or they are backed into a corner. It's about time people are held accountable. I will go to the papers, our local news channel (Peter Levy is a true advocate of these type of fights for the people). I know it won't be easy but I intend to do my best to change things! I am going to start writing to Mr Hunt and hopefully get some type of response, but a meeting (very doubtful) would be good. He needs to know that his Continuing Healthcare nurses or what ever they are, are abusing the system. Our disabled and frail should not be suffering at their hands! His framework says that a persons wellbeing and needs should be foremost in care planning yet I have seen nothing but neglectful, inhumane practices to save money. I have a suspicion that this may be part of a hidden framework that the government can't publicise or take responsibility for! Things are hard enough for our vulnerable, help should be easy. They shouldn't be treat like they are benefit fiddlers and cross examined at every turn, especially when it is obvious how ill they are!
Angela THANK YOU so much for this site. It has helped me so much. Reading the stories of all these brave people fighting for their relatives just gives makes me more determined to do whatever I can no matter how small to head in the right direction. My meeting is for Friday 11th Nov not last week as I thought, so if anyone has anything they think I should mention to my MP please let me know. More help the better!

Dee Dee, I agree Jeremy Hunt should know how his Framework is being misused and I intend to do just that. I began fighting for my son but after all the lies and negligence I have encountered I am wanting a full overhaul of the system for all our vulnerable adults. I have a meeting with Dianna Johnson today and hope to get her agreement to help open an investigation. I want her to speak with Jeremy Hunt and see how flexible his framework is and the consequences for CHC nurses if they say his framework is wrong and use their own interpretations of it to do a MDT/DST like the nurse I had did! If I get her ok and help I am going to need many factual cases to present, to help get these people punished for their negligence. They should not be working with vulnerable adults and should be sacked. Its a crime. Wish me luck!

Insist youread through the DST before you start doing the DST. The Assessor is not there to give you the funding they are there to make sure you DON'T GET IT.
These people are a law unto themselves and 'make up the rules as they go along'. They will ALWAYS try to downgrade you father's condition to give him a Lower Score than he is entitled to.
At one meeting (not the CHC Assessment, they told me that as my mother could be discharged from hospital within 48 hours she did not qualify for 6 weeks 'recovery' funding, (I have forgotten the proper name for the 6 weeks funding). Then said the discharge meeting would be held in 6 days time. Oh Yeh. I said they had just 'disqualified themselves' but they insisted it went on when my mother could be discharged and not when the discharge meeting was held.
When I eventually got it in writing from the Council that I would be granted the 6 weeks care, we were told that they would find a Residential Home for my mom for the 6 weeks but we would then have to find a home for my mother after that. They then said that if we could find a home for my mom quickly, then instead of going to their selection for 6 weeks and then being transferred to the Home we had found, she could go straight to the Residential Home we had found. 1 move instead of 2.
Off we went and found a permanent home for her and at the Discharge meeting told them of this and they turned round and said that 'As we have found a permanent home for my mother we were now NOT eligible for the funding'
How's that for twisted logic. These people will give you nothing. There are 2 CHC Assessments, In the 1st one the categories are rated A,B,C and you need at least 2 A's and several B's to go to the MAIN CHC which has about 11 sections and are rated Severe. High. Moderate, Low and finally No Needs. You need 2 Severe's (and there are only about 4 sections that have a score of Severe) and several Highs to get the funding.
Another stunt they get up to is to contact you to arrange a meeting, if you say sorry I am at work that day, they then select another date and you might be working that day also, so you say sorry, I'm working that day as well. They record that as 'REFUSED TO ATTEND MEETING'
I was asked to attend meetings and I said Sorry. I am holiday in Spain and will send you proof of that.
Several days later I had a phone call and the lady who said that as I had still gone to Spain, and I quote "Don't you care about your mother".
I said earlier they are a law unto themselves and do everything they can to stop you getting the CHC Funding. Everyone who comes into contact with these people become Shell Shocked with how you are treated. I know this sounds a horror story but that is what Social Services are like.
If you go on Google and put in CHC Assessments, both Assessments are on the NHS website, but each is about 40 odd pages long, but the CHC Assessments are at the end of the print off the whole. Good Luck, you're going to need it.

I'm sorry if my question is not exactly relevant to this thread, but I'm struggling for clarification. My question is: The need for a Continuing Health Care Assessment seems to be dependent on the outcome of the Decision Support Tool (DST) 17 page report, and that it relies on that report showing a need for continued HEALTH care (medical)? And I'm not sure if that includes the likes of Dementia, Alzheimers etc, or as it sounds medical only, ie infections such as urine infection, problems with catheters, low Potassium levels and subsequent falls in hospital due to all these issues, which my father has had recurring since May this year when admitted to Hospital for a mild Stroke.
The Hospital and Social services carried out a DST without myself present a month ago (when it had been made very clear to them by me that my Mother was not capable of representing my Father on her own, nevertheless they went ahead with what they called a chat! The outcome was a DST with no reccomendation for a Continuing Health Care Assessment . We were also told by both Hospital & Social services that my Mother knew what the meeting was about and that she had signed the DST. They then pushed to Discharge my father until I stepped in and asked for proof. No signature & eventually an acceptance on their part that we had been mis informed. I have this on an email from the Hospital.
I am today going to a meeting to re do the DST and I have this niggling uncertainty as to my question above.
I'm sorry it's long winded but unless I can clarify this point, I fear they may win again due to this health requirement issue?
Thanks Cernyw Llewelyn-Jones

Hi Dee Dee, Wendy & Jenny
Thank you for your replies. I thought it strange that someone who is immobile (though not from spinal injuries) could be classed as a 'No Needs' at a CHC Assessment but I heard that as the CHC assessment gets tougher, the Assessors are looking for more ways to disqualify patients from getting the Full Funding and this was one of the ways they are trying to do it.
But, the way you have all explained it, it has put my mind at ease so thank you all for your comments

Sounds unlikely to be cogently arguable. No need to move the person? What about maintaining skin integrity, toileting, socialisation for mood, behaviour and cognition? What about movement to maintain circulation or to prevent muscle wastage?
Managing a condition (and the condition is immobility - however caused) can't mean doing nothing when assessing the totality of needs.
I'd also argue the risk of falls was equal to the training and skill of those doing the hoisting.
Further, if previously at Severe, surely the descriptions in the High and Moderate boxes would be exceeded? It's worth remembering that the assessors and you should be working through the levels to assess need.

Hi.
I have heard that in the Final CHC, (Mobility Section) where the 'Severe' rating says 'immobile' this only applies to someone who is immobile with a spinal injury.
If a person is 'immobile' from the neck down (through old age), and cannot be moved from thier bed to a chair and back using a 'hoist, this is now classed as 'No Needs' in the mobility section as there is no danger of any injuries to the patient, as there is no need to move the patient any more. So the patient will lose the 'Severe Rating' and it will be downgraded to 'No Needs' and so may disqualify the patient from getting the full CHC funding. Has anyone had this problem yet at a Full CHC funding assessment??????????

DeeDee makes a good point. We have previously employed an independent nurse assessor to assist with an early Continuing Healthcare assessment and the subsequent Independent Review (IRP). The internet will have a list.

A recent development locally at least, has seen the DST dismantled and redacted for some reason, prior to allegedly having only the MDT's recommendation pages passed to a CCG manager by the CSU staff that carried out the assessment and the CSU panel that instead of making the decision for the CCG (Illegal), now allegedly only makes a second recommendation to the CCG.
Yet law actually requires that the DST in it's entirety is required to be used by only a CCG, to make an eligibility decision.

It's a national problem - serious abuse of the process

I've now had the latest DST sent to me in double quick time.

I downloaded the revised 2016 version from the web and it says, in the Executive Summary, " It is important to note that these are national tools and the content should not be changed, added to or abbreviated in any way. However, CCGs may attach their logo and additional patient identification details if necessary (e.g. adding NHS number, etc.)."

I take that to mean what it says. However, the one sent to me is nothing like it and has been adapted by the CCG. It has 45 pages - pages 1-5 are missing.

There is no Executive Summary containing the above warning about changing the DST.

Page 1 and 2 are a mish-mash of section 1. They also have mother's previous address incorrect.

There is no Lead Coordinator listed, or present, nor was I told there was one.

The Recommendation is handwritten on a continuation sheet and has not been signed.

There is a paged added where those present signed to say that they had attended, but the Recommendation itself is unsigned. My entry has had the date and the word "Son" added.

Pages 49 -54 are missing. (Equality monitoring) - this had been done at the Checklist, but I would have expected the pages to be included in the complete document.

Am I being pedantic here or is this a serious abuse of process?

Sue - as Dee Dee says, the DST is a form (an assessment 'tool') that is completed during the full Multidisciplinary Team (MDT) assessment. Although many people refer to this full assessment as 'the DST', it's good to keep in mind that it's an MDT assessment - where there should be input and evidence from various relevant people.

Chianti - any health and/or social care professional involved in your Grandma's care should flag up the need for reassessment. Sadly, the level of training and knowledge about Continuing Healthcare is shamefully low. GPs often know little - if anything - about it. Care workers have often never heard of Continuing Healthcare. Social workers have a legal duty under the Care Act to flag up when a person may need NHS funding, but (from the reports of hundreds of families) they very often don't. Care homes have a conflict of interest, because they will be paid less by the NHS (through Continuing Healthcare) than if a resident pays for themselves. The situation is far, far from ideal. It often falls to families to push for assessments - but of course that assumes that families know about NHS funding in the first place. You could write to the Head of Adult Care at the local authority (LA) and state that the LA is potentially in an illegal position by failing to look at whether your Grandma's needs are now beyond the LA's legal remit, and insist that they initiate a reassessment for Continuing Healthcare.

It is all a total farce and flawed at every stage. They are mostly overly restrictive and minimising needs ! I have just voted with my feet from being a co ordinator because of their false crap. I have tried and tried and tried to educate them. Over bearing and overly restrictive

Jeremy hunt needs to be informed of what is going on nationally. Very very few of them actually really understand the framework and the process !

What if no social worker has been appointed, or has signed themselves off at a time before The Care Act 2014 extended their responsibilities to self funders? Perhaps there will be some interesting cases coming up as all concerned appreciate the extended liability?
In my experience Care home managers, or more particularly lead carers, can be helpful at DST stage, but I've not heard of a manager suggesting CHC application. They tend to view it as turkeys voting for Christmas, as a split fee arrangement with SS or unlawful banding of fees paid by NHS reduces their income.
In effect, it's left to relatives to get informed and take action.

The care home or social worker should inform if needs have changed. You can also tell them yourselves you would like a checklist done again

Once a relative is in the care home whose responsibility is it to flag up deterioration in health and the need to review using the checklist for Continuing healthcare funding? Grandma had been assessed using the Checklist in 2015 and a DST was duly carried out. On that occasion she was not considered eligible for funding even though she had vascular dementia and multiple problems with incontinence and persistent UTIs. After suffering a number of falls at home, the doctor recommended we look into a care home and Grandma was accepted as a permanent resident in mid January. A few weeks passed until Grandma began with another series of falls that saw her going in and out of hospital as well as visiting urology clinics for suspected cancer of the bladder. Her age and frailty prevented a thorough investigation of this. At no point was any further assessment carried out as to whether she was eligible for CHC funding. She was taken to A&E after another fall, had problems raising her leg when assessed, but the attending doctor did not remove her socks to properly assess her feet. She was sent back to the care home at 2.45 in the morning and when her GP arrived later that day he diagnosed gangrene in her toe. It was left to auto amputate but still no one flagged up the need to carry out an updated assessment of her health needs. Who should be taking responsibility for ensuring that these assessments are carried out? The GPs tell me that they only advise that a care package should be considered when dealing with patients in their own home and pass family and the patient on to Social Services. Social Services don't do anything unless family or someone concerned asks for help. The care home say that this is the duty of the attending doctor (in hospital or a visit to the care home). Even the Integrated discharge team who have been very quick to send me contracts to sign making me responsible for paying care fees have abdicated the responsibility to the locality team! According to the NHS framework it is the duty of the "Relevant Body" I.e. the "CCG" or the "Board" but who is supposed to tell them???

Thank you so much Jenny & John for your replies.
Jenny - I will look at The Care Act as you suggest & John - Yes I am considering a complaint.
Update: NHS Nurse Assessor visited Care Home today to talk to same fantastic Team Leader & asked if she wanted to change/amend her observations. Team Leader said `No`& Nurse Assessor left.
So I must wait now to hear the Assessment results & prepare to Appeal if decision is not favourable. I will update this site when I know more.
Kind regards to all.

Very sorry for your loss, Jennie, may she rest in peace. Looks like a complete abuse of the process.
I would make a statutory complaint under The Local Authority Social Services and National Health
Service Complaints (England) Regulations 2009. You can complain to the chief executive of the CCG and the chief exec of the relevant county council about the social workers.
That will get them leaping about as there are set procedures which have to be followed.
I'm doing this in parallel with the appeals process.
Don't give up.

ps There was an excellent article on this site relating to self funders, and the effects of The Care Act 2014. Have a look at that too as it may help.

Sorry to hear your sad news Jennie. Your case is similar to my own in many ways, and perhaps demonstrates how widespread the strategy and tactics are throughout the NHS and Care homes in the UK. I'm glad the teamleader was fantastic for your case; it restores faith in humanity doesn't it? I can only applaud your commitment and objectivity. When you are ready, keep up the pressure and recover what your mother was entitled to. Remember that The National Framework says that evidence in DST has to be of an appropriate standard, and not Court standard, so make sure her notes don't "Go Missing" from the care home in the interim.
I am sadly convinced that "Wins" only occur where relatives are very well prepared and persistent. The reality is there is insufficient funding, too many old patients with long term conditions for the funds available, and a convenient level of ignorance among "shop floor level" NHS staff, which deters patients and their relatives.

Mum aged 91- severe dementia & aggression plus numerous health needs-been in Residential Home with Nursing for past 5 yrs. EMI Nurse & DOLs team recommended applying for full Cont. Healthcare funding in Sept 15. Checklist done by Care Home & sent off mid -Oct 15. I believe full Assessment DST meeting should have happened within 29 days? Delay after delay - meeting took place end May 15. No-one other than myself (well prepared-big file & read Angela`s book several times) & Care Home Teamleader (who was fantastic) turned up to support my Mums case. The 2 NHS Nurses - the decision makers - said this lack of interest by Professionals was because she was self funding - (£1000 per week) & if Social Services were paying all-sorts would have been there inc Social Worker, Mental Health Doc, poss GP. The NHS Nurses did not want to talk with me & it was only when I insisted on putting my viewpoint was I allowed to speak at the end of each Domain being discussed. Although 1 `severe` + 5 `Highs`+ other lower scores were given, the 2 NHS Nurses (who make the decision on eligibility & not a Panel - who I`m told only get involved when there is dispute) decided more info req`d on Behaviour to move score from `High` to `Severe`(thus triggering funding?) as they said Team Leaders` word is not sufficient & written documentation of aggressive episodes was not up to date & more detail is needed. So they will visit Care Home this week to obtain. Sadly my Mum died yesterday - 1 week after GP said she had entered end of life phase. So I am in process of dealing with funeral etc.
I will however continue to try to get funding dating back to Nov 15 when Full Assessment should have taken place & Mum clearly had a primary Health Need. I wonder if NHS drag this stuff out for as long as poss hoping loved one will die & relatives will give up the fight & disappear? During all this process - Care Home managers insisted that should Mum receive full Cont Care funding she would have to move to a Nursing Home - even pressuring GP to warn me as Mum was dying that if NHS Cont Care was awarded she would have to be moved & making me feel like a wicked daughter in Mums dying days.I think they all get confused with NHS Cont. Care (all fees paid) & Nursing Funding (only Nursing Component paid.)
GP admitted she does not understand the system! This lack of knowledge/education is a scandal & exerts unfair & incorrect pressure at a time of grief & despair. I still hope for a good outcome & encourage others to wise up, prepare well & keep persevering on behalf of their loved ones.

Thanks. The continuing care checklist has been completed by the hospital a few days before mum in law was discharged. If we hadn't asked if it was going to be done, we would not have known. It was a joke! We questioned the hospital about their answers and they replied that they could only base the report on mum in law's stay in hospital. No history of falls, this is her second hospital stay following a fall; incontinent - at least twice she has been found in a wet/soiled bed while in hospital etc etc.
Now she is at home with a live in carer who is saying she can't manage mum in law's needs and is asking for backup. The community matron is going to redo the checklist - but what a waste of time. If the hospital had listened to us at the time this situation may have been avoided. It is so unfair and such a strain on the family.
Any opinions, suggestions or advice welcome.

If we go for a retrospective eligibility claim, should the DST of the time be used to assess, or the one in current use please?

Can anyone confirm if this version was available before June 2016? I smell a rat. My mother was assessed on 31st March and I have only just received the DST, signed and dated only by the nurse on 25th April 2016. It looks like this document was not available before June. Can anyone confirm if the 2009 document was updated after March 2014 or at all? The one I have from 2014 looks like the 2009 document and is different to the the new one.

Hi
My mum in law is due to be discharged from hospital after being admitted with a fractured pelvis. This is her second serious injury due to a fall within a year. She has been supported at home by 3 daily visits from carers and frequent assistance from her daughters.
In the last 4 months she has had pneumonia, urinary tract infections and has been on low level oxygen therapy and antibiotics. Her mobility is poor, she is unable to prepare any meals for herself and it sometimes seems as if she has no interest in maintaining any level of good health.
Because her mobility is poor she is reluctant to go to the toilet, and wears incontinence pads, which she sometimes soils. Or she will hold her urine which causes discomfort.
She is in pain from artheritis, and has pain medication for this.
Her legs are constantly bruised and swollen and she has cream for this.
Generally, she is a lovely agreeable person, but for sometime she has been disinterested in "making progress" with her health and mobility and if left to her own devices she sits and daydreams.
I believe there is a primary health care need, but realise it could be a struggle to prove this.
Any advice will be gratefully received.
Thank you
She is in pain from artheritis and is on pain medication for this.

Unfortunately, I still cannot open the link to the document

Thanks for this update. I was wondering if there was something missing as my partner is on CHC and has a personal budget. According to the CCG they are entitled to have a review at six monthly intervals.
I am contesting that according to National Framework reviews are twelve monthly and unless there is a hidden interpretation somewhere I cannot see how they can change this.

I am very interested to read that the DST has been amended asking the question as to when the MDT agreed to the jointly funding of a care package. I am currently in dispute with my local CCG. They were fully funding my PMLD daughter, who is almost 28 years old, since 2008. Her community care home is outside our local area, I am from one area and her care home is in another. At no time has a social worker ever been in touch with us or the care home , yet the CCG in this area have offered a drastically reduced care package from fully funded to 23.7 hours saying that the other area will provide the rest of the care. This was almost 2 years ago apparently in October 2014. I appealed, had a local resolution meeting and they have referred it for further evidence although at the time of the local resolution meeting I didn't know what I was appealing against as they hadn't informed me of the exact funding split. I have been informed over the past month after a series of letters leading me to believe that the CCG in my area have been in discussion with the other area, that the other area are now in dispute with the council in my area as to who is responsible for funding!! The further complication is that my daughter has a personal injury award that I believe cannot be taken into account within the fairer charging standards but I am not prepared to take my chances. Its beyond me how someone who's condition can never be improved or cured can endure this treatment.

Please feel free to post on your website - I don't know how I can do this. Thank You Janis

Thanks for this update.
Personally, I suspect that the wording has been changed to reflect the fact that apparently, if an individual is in hospital when the DST is completed, it is only their needs during their admission which are considered!
I have learnt this myself only this week ,when trying to participate in one of my patient's CHC application - despite having been the person's s community mental health nurse for the last 7 years( and knowing them well as a result of this input), I was politely informed by the ward sister that my contribution to the process would not be required or considered!
Outrageous - and yet another example of NHS corruption!

Thank you for going through the new document and alerting us to changes.
I expect the "Hospital" and "Date" changes are so that CCGs can monitor their own performance and ensure they closely adhere to all aspects of The National Framework!

Thank you for this.

Are there any plans afoot for the Department of Health/clinical commissioning groups to rewrite the National Framework for NHS Continuing Healthcare and NHS Funded Nursing Care in the near future? I believe the last revision to that document was November 2012.

Here's the direct link to the word doc version of the amended DST: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/528272/Decision_Support_Tool_Amended.docx