NHS Continuing Care assessors break their own rules

Published 24/10/2013

Please note: This article was published prior to July 2022, and some information may be outdated.

Continuing Healthcare case study – Serious failure to assess health needs

Breaches in NHS health needs assessment protocols seem prevalent, where NHS Continuing Care assessors break their own rules and contravene National Framework guidelines.

One of the questions people often ask us is why the appalling things that go on in NHS Continuing Healthcare assessments are not front page news. It’s a very good question, and the answer is almost certainly a combination of things: Exhaustion on the part of families going through the care funding nightmare who, during and afterwards, just don’t have the physical or emotional energy or will to fight on or to tell their story afterwards; plus, a general lack of understanding and interest in the wider population and in the media.

‘Jane’ told Care To Be Different of her dealings with one NHS hospital in the north of England and how its failure to assess her mother’s serious health needs, and its attempts to force her discharge from hospital, are resulting in a hugely stressful battle to properly determine eligibility for ongoing NHS funding for full time care. Her story is all too familiar…. (All names have been changed.)

Flawed Continuing Care assessment process

Jane’s mother, Mary, was admitted to hospital at the start of August 2013, after suffering a catastrophic stroke that left her with various conditions including dementia, complete left-sided paralysis, near blindness, double incontinence and no chance of recovery.

Against this background, we once again hear of individual staff and assessors within the NHS brushing off procedure, ignoring established guidelines and manipulating assessment criteria to steer a negative funding outcome.

In mid-August, Jane was called to a meeting with hospital staff; her mother was, she discovered, to be discharged because she was ‘depressed’. Jane strongly objected, but the hospital remained adamant. Jane asked for Mary to be assessed for NHS Continuing Healthcare (CHC) funding – something that should be done automatically for a person with health needs who requires ongoing full time care. However, Jane was told categorically, (and completely incorrectly prior to proper assessment) by a nurse in charge of her mother’s care that Mary would not have any chance of receiving CHC.

Hospitals forcing older people out before assessing needs

Later the same month Jane discovered the same registered nurse had falsified details on Mary’s records, stating that the family wanted to discharge the patient because of “low mood” and that the family wanted to ‘self-fund’ her ongoing care.

Worse still, the paperwork indicated that Mary was not to be considered for NHS CHC funding – directly against Jane’s wishes. The NHS’s own guidelines state that no hospital discharge notice should be completed or issued before proper health needs assessments have been completed and proper ongoing care plans are in place. The same nurse completed the hospital’s own Nursing Needs Assessment without any member of the family being informed or present (again, contrary to guidelines) – and failed to take reasonable steps to ensure a full CHC assessment was carried out.

NHS Continuing Care assessors keeping families in the dark

After Jane complained, a full assessment of Mary’s needs was carried out. This stage uses a form called a Decision Support Tool (DST). It seems that an initial Checklist assessment (the first stage) had been carried out without Jane’s knowledge, and she was simply presented with the Checklist scores at the full assessment.

Both Jane and her brother hold a Lasting Power of Attorney for their mother and should have been informed about the Checklist at the outset and invited to attend.

The ‘scores’ written down on the Checklist paperwork were far too low – which meant the assessment process had previously been incorrectly halted. The Checklist should, of course, have been done properly in the first place, so that Mary went through to the full assessment (DST) stage without the family having to intervene. Many families would not be aware of this, and would simply believe the NHS when told it’s ‘not worth assessing’ their relative or that they ‘don’t qualify’ for NHS funding.

Jane attended the DST meeting in early September 2013; also present were a CHC assessor, nursing staff and a social worker. Jane was not given any explanatory information prior to the meeting, again contrary to all guidelines.

Lack of proper care notes and input

The CHC assessor had never met Mary before the meeting; no physiotherapist or doctor attend either – both of whom would have been in a better position to give a clear picture of Mary’s health needs. By the end of the meeting, the assessor admitted that Mary’s nursing notes were very poor quality and that they did not reflect Mary’s serious health needs – and yet they were still used as a basis for the assessment.

Maladministration in Continuing Care scoring

The assessor also incorrectly downgraded certain scores – without any basis on which to do so – to render Mary’s final combination of scores too low for funding.

Jane, just like many other people, found herself having to contradict many of the things said during the meeting and in the nursing notes. If she hadn’t done this, the scores (just as in the earlier Checklist assessment) would have been accepted wholesale.

Jane also reports that the CHC assessor allowed new terminology and criteria to be made up as part of the scoring process. The assessor also allowed the statement from a nurse that Mary ‘assists’ and ‘co-operates’ with hoisting to diminish her scores; Mary is completely paralysed down her left side and cannot ‘assist’ in any way.

During the meeting Jane was able to show that Mary had severe cognitive challenges, on account of her dementia, and that these would need specialist care – and yet the hospital had been quite prepared to discharge Mary prior to this assessment meeting.

NHS Continuing Care assessors’ lack of knowledge and deliberate downplaying of needs

The way in which the assessment process was being carried out was in clear breach of the National Framework for NHS Continuing Healthcare, the very guidelines that the NHS is supposed to follow.

We hear from other families that NHS assessors sometimes admit, when questioned, that they’ve either never actually read these guidelines or they’re not very familiar with them. These assessors are making recommendations for funding based on a lack of knowledge about the process they’re supposed to be following – and yet their decisions and actions affect someone’s whole life.

In mid-September Jane received a letter stating that her mother was to be refused CHC funding. The nurse and social worker were in agreement that they had not identified a ‘primary healthcare need’ (the term used in NHS funding decision making). The same letter trivialised Mary’s complete left-side paralysis as just “weakness” and it neglected to mention either her dementia, double incontinence or serious visual impairment.

Assessors breach National Framework guidelines

Jane sent a letter of complaint to the local Clinical Commissioning Group (CCG), describing the catalogue of failures to date, including the actions of the assessor. It included everything from the failure to fully report her mother’s health and nursing needs, and their intensity, through to the assessment scores being downgraded not only during, but also after the assessment meeting behind Jane’s back.

Understandably, Jane has rejected the funding decision outright and has insisted that the assessment process be repeated, this time correctly and strictly in accordance with National Framework and with healthcare law.

Like so many other families, she is faced with challenging systemic failures and negligence, and yet she is working full time, travelling long distances to visit her mother and, again like so many, facing the closing ranks of a healthcare ‘system’ that seems set on conspiring against the very people it was set up to help. And the people it seems to discard most easily are those who are old. Aside from the physical stress, there is of course the huge emotional stress and distress for Jane seeing her mother deteriorate at the hands of a system that just seems to want to ‘offload’ her.

Lack of action, attempts to distort the process and disappearing paperwork

Jane has contacted journalists, her mother’s MP and her own MP, plus the Secretary of State for Health. At time of writing, things are very much in the balance as regards a new funding assessment and decision.

Despite Jane’s insistence on the assessment procedure being repeated because of the very clear maladministration, the CCG is insisting that she will have to go to appeal – a lengthy and often exhausting process that many families feel is simply an opportunity for the same assessors to throw a case out.

The CCG has also said that in order for an appeal to be heard, Mary must vacate her hospital bed first. This is not in the National Framework guidelines.

In addition, the CCG claims it is following a ‘local policy’ in all this, and yet it has to date been unable to produce a copy of that ‘policy’. The Checklist paperwork has disappeared, two members of NHS staff have tried to get Mary (who has severe dementia) to persuade Jane that she’s not allowed to have access to assessment notes (again, incorrect – let alone appalling practice), and the NHS assessor ignored her duty under the Mental Capacity Act regarding obtaining consent prior to the assessment.

Also, there are no clear care plans in place for Mary’s severe dementia needs, nor her communication, psychological or emotional healthcare needs – and yet the hospital are trying to push her out without any reliable decision having been made about who is responsible for paying for her ongoing care.

The CCG funding panel does not see the circumstances around Mary’s assessment as ‘exceptional’ and therefore is refusing to overturn the recommendation not to provide ongoing NHS funding. It appears to have ignored the lack of consistency, the unreliable and inaccurate evidence and the failure to follow procedure at all levels. And, of course, the CCG holds the funding budgets…

This awful situation seems a horrific tale of negligence and willful obstruction, and indeed it is – and also, sadly, it is very common. Fighting a system that is in effect its own judge and jury is placing enormous physical and emotional strain on Jane and her family – and this is an experience shared by many others across the country, too.

Jane comments:

“If it is at all possible, I would urge any family to try to gain access to medical notes, care notes and hospital records, as in my case these have revealed how little mention is made of my mother’s health needs. They are more concerned with detailing things like ‘bed rails intact’, ‘catheter draining, ‘privacy and dignity maintained’ and other notes that say nothing of medical importance for the assessment.

“Also, as I have found, when a machine as big as the NHS is lying, involving many individuals, they often dig their own graves, so to speak: they have all told different versions of what’s happened and they seem generally so complacent with their practice, they barely even bother to cover their tracks.”

Jane’s case has been going on for ‘just’ a few months, and that’s bad enough. Many families battle this for well over a year, sometimes several years, to secure the NHS funding their relative has already paid for during their lifetime – care that the NHS has a duty to provide, in law. Read more about care fees and NHS Continuing Healthcare funding

Tagged Categories: CHC essentials, CHC funding, Checklists and assessments, Getting assessed, NHS Continuing Healthcare

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81 Comments

Valerie bradley July 9, 2020 at 4:50 pm

Hi since my last comment
I have been doing more research l,was in the main looking,for something as regards the nurse assessor, as from the many storys here is the one that is most likely to attempt to lower the score domains
So l went to the royal college of nursing, to try and find out what a good nurse is expected to do,l found what l wanted and if you have to state to the nurse assessor what you found out on,her nurses site,l,really believe you will have a good chance of having a fair assessment.
Here's what l found out,l found a copy of the nurses code and downloaded and printed it out( it was 2018 version) the 2 points l will be putting to the nurse,at the beginning of the assessment are from the nurses code one states that the nurse should always be HONEST, and the second one from the nurses code should wipe any smile of her face it,states as a nurse you must follow the laws of your country, of course that means she has to carry out the assessment according to the Coughlan case ,if she does not l will be writing to the RCN,the CCG have been laughing about the Coughlan judgement for years and so they have their answers to this ,so l dont think they will be expecting the nurses code being quoted.
Sometimes you have to find other sources of information to stop the lies maladmistration,and every thing sordid going on feel free yourself to take look at the nurses code

Valerie Bradley May 12, 2020 at 3:53 pm

Should have had my DST finished by now ,but it's all on hold till the covid 19 pandemic,is managed that l fearnwill take some time.
I have been appallingly treated by My LA/NHS,over a 5 year period, l have studied very carefully the way the NHS /LA's work as you all know not much is achieved from,following their appeals the way they work is disgraceful, lying medical records disappearing or altered,and so on.
The reason,thy have succeeded for years in denying CHC dispite Coughlan is because all of us go to the panel,meeting,the IRP,The ombudsman and only a very very few can afford a judicial review,the NHS/LA 's know that.they can then sit back for years tying us up in corrupt appeals for years.this is my answer to the methods they have used for years.
It is quite simple but you will have to have lots of courage and fortitude to stand up to the hostility from the NHS/LA 's because they will not want to except, their time proven methods which have worked for years to deny people what they were legally entitled,will have finally failed,
I am doing it now and you can do it to ,simply refuse to pay social care bills,
( l have researched this they cannot stop your relatives care or your care,its in the 2014 care act)the only action social services will have is to take you to court,but they also know that we will all use as our defence,that yourselfs or relatives, have health needs and its illegal for them to,provide the care,as its mearly incidental and ancillary and that's why we are not paying illegal care Bill's.
I stopped paying my care Bill's over a year ago,they tried all their bully boy tactics,and just like they had done to me l ignored them,and put in a complaint stating it was illegal for me to,pay Bill's as l am over the line of mearly incidental and ancillary , l am not supported by any large organisation l am a 73 year old widow living on my own,with 31 healthcare needs, and l am in palliative care for heart failure,l am,interested in,how this will all pan out?
obviously this with have a knock back on,the NHS CCGs as the LA's will inform them,that practically every one is refusing to pay for there social care who were found by you that they did not have a primary health need, the DOH,will be involved whether they like it or not,but the best bit huge publicity,for the wrongs of continuing healthcare.l hope you all do,as l have done Dont,pay any LA charges

Stephen July 10, 2018 at 10:03 am

Re previous post ...I have since discovered that the nurse assessor at the Bromley assessment (and possibly other nurse assessors) are not properly employed by Bromley CCG. In this case the nurse assessor was employed by her own 'one employee' limited company. As well as both her and Bromley possibly being in breach of HMRC IR35 rules, it does leave the system open to abuse. Do you think that agency (or non PAYE) workers will survive in the contract if they start acting fairly and obey the Framework rules? No I doubt it. Any nurse who doesn't get the right results (NO FUNDING) will, in my opinion. not get a contract renewed.

Stephen July 10, 2018 at 10:02 am

I have been through two funding assessments on both occasions the nurse assessors agreed higher domain levels but falsified the DST report to downgrade the domain levels. This of course resulted in no funding. However, I recorded the these meetings without telling them (this is 100% legal) and was then able to prove on the first assessment that they had lied. This resulted in the first CCG miraculously finding 'new evidence' and awarded my Mother funding. My Mother then went to a local home that the first CCG approved. Unfortunately the home was poorly managed and allowed another resident to punch my Mother in the face. The home had been warned previously. When I complained about the assault they gave my Mother 28 days notice to leave. Since then this home have been investigated by the local Safeguarding unit who found other problems and mismanagement and reported them to the police. I found another home for my Mother about a mile away. The first CCG inspected the new home and were more than happy with it. Then, to my horror and dismay, this CCG withdrew funding because I had 'moved my Mother'. This is despite the fact that I had no choice and that the CCG had inspected and approved the new home. I was give all sorts of excuses and told that funding was now the responsibility of another CCG. That denied responsibility and after 3 months of complaining they reluctantly agreed to another assessment. The same happened again. I recorded the assessment and again they said one thing but falsified the DST report. I have of course reported this and formally complained. A first they sent a letter denying this (despite irrevocable proof) and then just refused to answer my emails. I spoke to an area manager for the CCG NHS and she told me that there was nothing they (NHS England) could or would do about the maladministration and other unlawful practices.

Christine Dyer February 24, 2018 at 10:12 am

I am a community nurse and have assessed patients for NHS Continuing Healthcare (CHC) Fast Track and through the Decision Support Tool (DST). In all cases to get CHC you have to have a high level of nursing need to be entitled to it, it's not as simple as someone having a chronic or long term condition. For example the DST is assessed and calculated by looking and the persons individual needs these range from physical to psychological needs. The higher these needs the more entitled that person is, we do also relie however on the evidence that healthcare professionals are able to provide during the individuals care this includes comparing what the person was previously able to do to their current state and sometimes the evidence is not there to support the assessment and this is why it is so difficult to assess sometimes. Unfortunately word of mouth is not evidence after all it is very easy to over exaggerate someone's needs, can I also say that social care funding is just as difficult to get and in many cases the individuals needs are more social care orientated than nursing care orientated. by experience I know that every story has two sides and I think it is unfair to slate nurse assessors when the truth is we don't know what their findings were and what led to their decision. Unfortunately not everyone is entitled to it and is wrong to presume they are.

Melvin Schneider January 31, 2022 at 12:36 pm

The Nurse Assessor refuses to listen to the family at the DST and makes his or her mind up after talking with the Local Authority representative on the MDT. Despite quoting evidence from care home notes, they refuse to listen to the family making the assessment unfair and not impartial. NHS don't want to pay - that's their stance. They are judge, jury and gatekeeper. You ain't getting any money

Paul May 10, 2018 at 3:44 pm

You couldn’t be more wrong - Nursing Care is free and therefore it has to be proved that a person is not eligible rather than the other way round - as a community nurse you will be incorrectly informed by CHC operatives that it’s only for a primary health need when it’s applicable for primarily health needs - a huge difference

SL March 7, 2018 at 9:56 pm

Dear Christine,
Could you advise the forum how many assessments you have completed and how many have been granted NHS Continuing Healthcare (CHC)?

"Word of mouth is not evidence at all" - unless it is a false statement written down by an assessor.
It is also very easy to UNDERSTATE someones needs, actually it is much easier.

We have obviously been very unlucky with the various assessors allocated to our cases if there are in fact some good ones out there.

Angela Sherman February 24, 2018 at 1:24 pm

I agree that it's unfair to stereotype and to tar all assessors with the same brush. However, as you'll see from the thousands of comments on our blog and Facebook page - most from individual families reporting what has happened in their individual cases - it's clear that the behaviour of some assessors is questionable, at best. It's not always the case that a person who receives CHC needs to have high level nursing needs. Take Pamela Coughlan for example, who still receives CHC and who is still eligible. In addition, just one domain with a Priority score or two domains with Severe scores will return a result of eligible. Depending on the domains, this may not always be for high level or complex nursing, but the totality of need will nevertheless reflect the NHS's legal duty to pay.

BARRY MOORE January 3, 2018 at 11:17 am

I fought for NHS Continuing Healthcare for 5 years. We were continually refused, despite my mother satisfying all legal criteria.I eventually won
and mum was looked after in a very caring nursing care home, for the last 4 years of her life. I appreciate all the comments
made and genuinely feel incredible sympathy for all going through this totally uncessary process. However the process is actually very simple.The only and I stress only test necessary under the law, is does the patient have a primary health need. The legal test is Coughlan. If your loved one has similar needs to Coughlan, they qualify, end of. You will win, however because of all the smoke and mirrors introduced by your adversaries, such as support tools criteria etc, the battle will be intense. But please keep it mind that their processes are not legal. In fact throughout my entire battle, every legal submission was ignored in favour of their eligibility criteria. They will distort the truth, exaggerate, procrastinate, lose documents etc. It will be an exhausting, time consuming process, but you will win with dogged determination.

Angela Sherman September 16, 2017 at 4:07 am

NHS Continuing Healthcare - is it worth the fight? http://caretobedifferent.co.uk/nhs-continuing-healthcare-still-worth-the-fight/

SL September 14, 2017 at 2:24 pm

Sadly the reality is there is little hope of securing Continuing Healthcare (CHC) and those involved will go to ANY lengths to defeat you. Without giving the full details, my father was 98 with multiple issues, including dementia and limited mobility, clearly nearing end of life. He was transferred from Hostital to a NHS Intermediate Care Unit. My father's assessment was led by "X", and amongst other things, they refused to acknowledge a high falls risk which we vehemently challenged. After a difficult evening visit during which he self mobilised, he was found the following morning "in bed" with a fractured hip and hospitalised. The following day his case was presented to the CCG by "X" and declined - the formal minutes clearly refer to his "fall".

Dad was operated on, caught pneumonia and died. There was an inquest. The NHS solicitors "forgot" to bring the case records. "X" was called to give evidence under Oath. The Coroner asked "X" if dad had fallen - answer "No". The Coroner asked "X" again, are you sure ? answer "No". The Coroner said he believed something had happened that morning but without evidence could do nothing. In recent weeks we also realised that we have an e-mail from "X" advising that funding had been declined and wishing him as good recovery from his "fall"...

Angela Sherman September 16, 2017 at 4:06 am

SL - that's dreadful. The lengths that some assessors are prepared to go to avoid providing funding are deeply shocking, as many families sadly know only too well.

Mary January 12, 2017 at 9:03 pm

Thank you for the advice. Just to update you, Mum was readmitted to hospital the following day. The consultant on the ward said Mum could only be fast tracked if had 3 weeks or less to live. I disagreed with her and it was left for her to look in to. To cut a long story short, Mum was moved to different ward and the consultant here accepted that Mum is terminal and has agreed to fast track today for CHC. She will complete paperwork and discharge team are to advise me of possible care home placements with available bed (within the funding bracket). I feel utterly exhausted trying to stand up to the giant NHS machine where sadly I came across constant hurdles, lies, ignorance and lack of compassion. I can now focus on coming to terms with Mums end of life and grieving. I feel comforted that I managed to fight for Mum and get what she is entitled to. I wish everyone reading this blog all the best and not to be too hard on themselves if they do not succeed.

Angela Sherman January 20, 2017 at 9:31 pm

Wishing you well, Mary.

Jenny January 7, 2017 at 9:11 pm

I have read recently that there is another care plan called PhB (personal health budget) I have been trying to look into this more as my daughter looks after her aunt who has been awarded Continuing Healthcare (CHC). The problem is my daughter has given up her work to care for auntie full time and is finding it a struggle financially. Whilst care can be bought in with CHC my daughter is with her aunt 24/7 and other than two carers for one hour a day does everything else herself. My daughter is obviously saving the NHS a lot of money. I understand she can be paid as a personal assistant to her auntie if she went down the PHB route. Do you know anything about this and what are the pros and cons? Is it means tested, unlike the CHC. Many thanks

Angela Sherman January 10, 2017 at 3:34 pm

Jenny - a Personal Health Budget is simply a way of receiving agreed funding, such as CHC funding, so it's not mean tested. This article may help: http://www.ms-solicitors.co.uk/community-care-law/nhs-continuing-healthcare/factsheet-personal-health-budgets/

Mary January 6, 2017 at 9:27 pm

Can anyone advise me please what I should do next ? Apologies for long text. It was the district nurse visiting my Mum at home on 1st December, to change her leg dressings, who blurt out to me that Mum had symptons of heart failure (HF). She had edema and shortness of breath. She was admitted to hospital on 5th and after 2 weeks, (during which time Mum had infusion to relieve swelling and developed cellulitus) I received phone call from staff nurse saying they were discharging Mum that day to a local "step down" unit for rehab and physio before going home. I asked for the third time, since admission, what stage of HF, Mum was at. She said a heart nurse would follow mum in to the community and answer my questions. The next day I visited the unit Mum had been discharged to and was met in the corridor by a carer who explained they tried to mobilise Mum in the morning but she turned blue, so they called a GP who confirmed Mum was in the end stage of HF and was to remain in bed to avoid exertion. She suggested I spend as much time with her as possible and that the plan was to move Mum to a local nursing home who cater for end of life care. This staff member said the hospital should never have discharged her to the unit as it is unsuitable placement. I rang the heart nurse at hospital later that day who explained they normally see patients on hosp wards before discharge but admitted they didnt see Mum "for some reason". She checked her records and also advised that Mum's recent iron levels were low (whilst still in hospital care) and she would need medication for this. She confirmed the community heart nurse would visit Mum at the unit in due course. I visited Mum daily at the unit and and was shocked to learn that the GP attached to the unit (this was the third different GP) had visited on 28th December and after asking my brother who was visiting at the time to leave the room, carried out a 20 minute assessment. He decided she was medically fit to go home and as she did not meet the "only 6 weeks to live" criteria, the end of life nursing home was no longer suitable. Apparently, Mum told the GP that she would like to be resuscitated should her heart stop, and the GP told my brother that the suggested nursing home do not resuscitate for patients in palliative care (I was under impression this was only the case, if a DNR form was completed ?) The upshot was that the following day, I met a social worker with my brother (Mum was asleep in bed throughout) to discuss discharge plan. He explained that the unit Mum was in was an inappropriate setting and that Mum's options were to either return home with a suitable package of care or go in to private nursing home. He said that even though she has less than 23K savings, because she owns her own house, it would be sold to fund the nursing home. I said I was not happy with the latest GP's assessment and that only the night before I had witnessesd 2 carers transfer Mum from bed to commode and vice versa. That morning, I also saw carer move Mum from armchair to bed (about 3 meters) using a wheelchair. The social worker tried to wake Mum and said he would return as he has to seek her views on where she would like to go and agreed to await matron's assessment. Of course since then I have found out about CHC on line and am wondering if Mum would qualify. A letter dated 23rd December from heart nurse sent to the 2nd Dr who visited Mum in unit lists Mum's diagnosis as " LVSD, EF 30-35% (2013), IHD, MI 2011, IRON DEFICIENCY ANAEMIA, CKD, AF" and confirms the first GP to visit Mum in unit said Mum "had end stage heart failure and was non-rehabable" (I hold a copy of this letter as it was sent to Mum's home address)
I was under impression from ward Dr in hospital, that Mum was to have an echocardiogram 9th December, but this letter seems to cofirm the last one was carried out in Feb 2013.
She lists the meds Mum is on some of which, reduce swelling, thin blood, slow heart beat and antibiotics for cellulitus. To date, I haven't witnessed Mum walking with frame and for the last few days, mobile hoist is being used for toileting.
Do you think Mum has a primary health need ?
If so, whom should I ask to carry out full CHC assessment ? (I dont have a single point of contact but find heart nurse at hospital most efficient)
If Mum has longer than 6 weeks to live, does that mean she cannot be fast tracked for CHC?
Where would I be able to get copy of discharge letter from hospital ?

Mum had agreed to Power of Attorney early December but due to error on paperwork this has been rejected.
Can you advise me what order of action I should take ? Although individuals at Mum's unit are pleasant I know the unit's agenda is to move Mum on. Quite simply I do not know who believe any more.

Angela Sherman January 10, 2017 at 3:27 pm

Mary - the only way to know whether your mum would be eligible for Continuing Healthcare is for her to be assessed. Take a look at these two links in the first instance: http://caretobedifferent.co.uk/getting-the-nhs-continuing-healthcare-assessment-process-started/ and also http://caretobedifferent.co.uk/paying-for-care-between-hospital-discharge-and-funding-decision/ There is no specific time period that a person must have left to live to have in order be Fast Tracked. This may help: http://caretobedifferent.co.uk/continuing-care-fast-track-assessments-how-to-get-a-quick-decision/

David December 7, 2016 at 5:46 pm

I've been reading through everybody's experiences here and I'm reassured to know I'm not alone. My mum suffered a subarachnoid haemorrhage back in September 2014. After several months in various hospitals, she was moved into a nursing home where she has been since. Since May last year she has been receiving NHS Continuing Healthcare funding.
However, they carried out a review assessment yesterday, at which I was present. It was clear going through the "Decision Support Tool" that very little had changed since last year, certainly nothing that has lessened her care needs. However, I was shocked at the end to be told by the assessor that she is recommending that my mum no longer meets the requirements as her "social care needs outweigh her healthcare needs". My mum is bed-bound, immobile, doubly incontinent, fed via a PEG, severely cognitively impaired and can only communicate at the most basic level. I really struggle to understand how they can claim that she does not have a primary healthcare need.
Reading about other people's experiences in challenging such decisions, I'm very anxious as to how this is going to play out.

Angela Sherman December 16, 2016 at 9:37 pm

Stand firm, David. I can well imagine your feelings at funding being removed. Was a local authority representative involved in the review? Write to the Head of Adult Care at the local authority (LA) and make it clear that the LA is now almost certainly in an illegal position by effectively accepting responsibility for care. This may help: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/ and also this article: http://caretobedifferent.co.uk/nhs-continuing-healthcare-should-social-workers-be-involved/

Angela Sherman November 2, 2016 at 11:20 am

Diane – you don’t necessarily need any legal advice at this stage. The ‘second phase’ that the social worker mentioned sounds like the full multidisciplinary team assessment, where the Decision Support Tool is completed. It may be difficult, but equally, given that the social worker does not know your mother, there seems little basis to assume that’s a certainty. This will help: http://caretobedifferent.co.uk/what-are-the-different-stages-of-nhs-continuing-care-assessment-and-appeal/ Also, your mother must be assessed for Continuing Healthcare before she's discharged from hospital: http://caretobedifferent.co.uk/paying-for-care-between-hospital-discharge-and-funding-decision/

Diane October 26, 2016 at 2:41 pm

I am new to this process and badly need some advice please. My mother has suffered a number of strokes and is currently still in hospital. I have asked that she be assessed for Continuing Healthcare (CHC). We have been invited to a meeting to discuss her discharge with unfortunately the same social worker who dealt with us after her earlier stroke. She is waiting for a PEG tube to be fitted, is doubly incontinent, has significant cognitive issues including perseveration, short term memory loss and processing speed, a long history of mental illness, is unable to move without a hoist and is partially sighted and cannot reliably communicate her needs. Speaking to the Social Worker she believes that she will trigger the second phase of assessment but thereafter she is unlikely to qualify. She hasn’t actually met my mother but this does not seem to be important. I am not sure what the next stage of the process should be. I know that is difficult to get CHC but it seems that she has significant issues which are being played down. Can anyone offer some help as to what happens next? Is it worth taking some legal advice at this stage, I know that there are solicitors who specialise in this kind of thing.

Jayne mcneil September 21, 2016 at 3:40 pm

Could I please have some advice on Continuing Healthcare (CHC). After along struggle we eventually had a meeting with CHC to complete the Decision Support Tool (DST), the nurse assessor said she was going to recommend that mum has a healthcare need and should receive full funding. How often is the recommendation over ruled from panel; feeling very dubious until funds are in place.
Thanks

Angela Sherman September 28, 2016 at 11:44 am

Jayne - this may help you: http://caretobedifferent.co.uk/can-ccgs-overturn-nhs-continuing-healthcare-eligibility/ (We don't have stats on how often recommendations are overturned, but you may be able to find this out via a Freedom of Information request to your CCG.)

Jenny August 2, 2016 at 5:08 pm

My daughter cares for my sister in her house, she is 90 years old, needs a lot of care. When she first came to live in this area to be near us, her only family, she went into residential care and funded herself. Last year she was having falls in the residential home and eventually was taken into hospital. The home then decided they could not take her back as she could not weight bare, the hospital also said she needed nursing care now. We looked everywhere to find a placement, along with the hospital, we could not find anything and the hospital were saying they needed the bed etc. My daughter who was a matron in a care home for some 20 years said she would give up work and care for her. Auntie has lived with her for over a year now, about 6 months ago she had a stroke and went into hospital again but the nursing staff stipulated that she now needs two persons to move and clean her so we employ, through social services two care staff morning and night, although she does seem a little better she cannot do anything for herself, a hoist has been fitted over her bed. Auntie has Parkinson's disease, very arthritic and diagnosed with Lewy body dementia, she needs help to eat and drink. When I read about assessing for Continuing Healthcare (CHC) it states care can be given in care/nursing homes or in your own home but it does not state living with a relative. Does this still apply? Auntie pays for all her care including a wage for my daughter so if she were awarded funding under CHC how would this work? Many thanks.

Angela Sherman August 6, 2016 at 9:07 am

Jenny - sadly it's not unusual for families to come under such pressure to get an older relative out of hospital. On the previous occasion and although during her latest admission to hospital, your sister should have been assessed for NHS Continuing Healthcare funding before she was/is discharged. Continuing Healthcare is available regardless of the setting in which a person receives care, i.e. it can be a care home, a nursing home, a person's own home - it doesn't matter. What matters are whether a person can be cared for properly and safely in that setting. Also, it doesn't matter who is actually delivering the care, i.e. it can be a relative. This may help: http://caretobedifferent.co.uk/where-can-a-person-receive-nhs-continuing-healthcare-funding/ and also this article: http://caretobedifferent.co.uk/paying-for-care-between-hospital-discharge-and-funding-decision/

Dellas Beschorner May 5, 2016 at 9:18 pm

I need advice on how to stop mum having to leave her nursing home.
Her funding will have run out in June. That is the house that was sold and savings.
When mum went into the care home three years ago we were led to believe that if she was their for three years and the money run out we would not have to worry because the care home had a arrangement with the authority. But this has turned out not to be the case.
Mum never had a Continuing Healthcare (CHC) assessment when she went into the care home, but we have started one now and she has passed the check list, 2A 6B 3C.
Mum has Alzheimer's and is at high risk of falls, she has had 11 within the past six months and she has always had them long term. Mum needs assistance with her mobility and requires mobility equipment. She has Glaucoma and Osteoarthritis. She is double incointinant. Has cognitive impairment frequent short term memory and even her long term she is confused with. She has disorientation to time and place. She only has a limited range of her needs and basic risks. She is unable to make choices on most issues. Communications about needs difficult to understand sometimes and has to be interpret by someone that knows her well. She is not always compliant with her medication and hygiene. She has hallucinations and Delusions, mood disturbance and anxiety.
The Social worker is recommending that mum is not moved to another care home as it would be against her interest. And mum will be a 100 years old this year.
The amount the local authority give to care homes is very low and will not meet the cost of this care home, and I don't have the money to top up the fee.
The social worker has told me that the authority will look around for the cheapest homes and if I refuse them they will just let the situation go on and on and then forget about it. She said' this is what they do.
The authoritiy is refusing to put the finances through the assessment until the money goes down to £23250, which will happen in June. The CHC assessor has warned me not to use that money for the care home.
I asked the social worker what will happen when the money runs out, she said' the care home will have to get it from the authority. 'But that won't happen I don think.
How do I stand legally, can I just stand my ground without causing legal problems for myself.
I said to the social worker' "If they move her they will kill her."
She has made close relationships with some of the staff. She is settled and they know her needs. The social worker agreed with me but said it would be up to the authority.
I don't think she will live more then another year perhaps a bit more.
It is so wicked to do this to her at the end of her life.

Angela Sherman May 9, 2016 at 3:18 pm

Dellas - it doesn't matter how much money a person has when they first go into care; the first thing that should be done is a Continuing Healthcare assessment - to ascertain whether or not they have to pay at all. It's good that you've now had the Checklist done. You may want to submit a claim for some of the money your mum has paid so far. The next stage (the multidisciplinary team assessment) must be completed before anyone talks any more about your mum paying or about top ups. When it comes to local authority funding, top ups should not be automatically requested. You may find this publication from Independent Age helpful: https://www.independentage.org/factsheets/care-home-fees-paying-top-ups-in-england/

pat February 27, 2016 at 1:15 pm

Is there anyone who has found it easy to get NHS continuing healthcare? My 91 year old mother is in hospital after having a severe heart attack. I am told that she now has only one third of her heart working and that this cannot improve and will eventually affect her whole body.. She has breathing difficulties, hallucinations, skin breakdown and does not eat and I am told she will need palliative care. I am now waiting for a care package to be decided, prior to discharge, should I ask for CHC assessment?

Angela Sherman February 27, 2016 at 7:24 pm

Yes, Pat - your mother must be assessed for NHS Continuing Healthcare before she is discharged from hospital. This article may help: http://caretobedifferent.co.uk/nhs-continuing-healthcare-and-hospital-discharge-part-1/

(L) February 18, 2016 at 5:32 am

Well (in short) we're do I start? My dad suffered with dementia and other Health problems, he was in an EMI Care home. I have had two meetings one with CCG, where they told me my dad did not qualify for CHC, even through I was not given all the records at the time of the meeting, so I appealed and had a meeting with the IRP panel. They had to adjourn the meeting as the CCG turned up with evidence (assessments), also in completed on the day?, which no one had seen before. I have a list of other errors that they have tried to cover up, from false assessments to incomplete records to other patients' data in my dad's records, the list goes on and on. The CCG were told to apologise to me in the meeting. I have never seen or heard such a cover up from a major organisation in my life. You'd think that this would not take place but wow they do their best to try and get you to give up the process. (I am not going any were, am here for the long race not the walk in the park). It's been over 3 years, and I think am starting to get somewhere now. Some things they do, withhold evidence, send you files the day before meetings, incompleted documents, make up their own rules on an ongoing basis to suit them, also they can employ a person who is a qualified solicitor but has a position of head of department and tries to act non legal in his/her position representing the CCG? But you cannot take a solicitor acting for legal matters in the meeting? Or record the process?
Maladministration seems to be the in word; let's hope I can get this resolved sooner than later!!

Angela Sherman February 21, 2016 at 5:54 pm

Hi L - sadly many families have experienced the same kind of shambolic behaviour on the part of Continuing Healthcare teams as you have. Having another patient's record in with your dad's is also a serious breach of confidentiality. You can absolutely take a solicitor with you to meetings if you want to. If the CCG has told you you can't, they are wrong! Hang in there. Let us know how you get on.

Vanessa June 20, 2015 at 10:57 am

Hi All and thanks for brilliant website and advice, long story but my Mother was discharged from hospital following a fall, broken and replaced hip, huge haematoma to leg which happened during operation, which required two further ops for debridement, then transfer to different hospital for extensive skin graft. She was immobile, suffered with dementia and further delirium, registered blind, severe hearing problems, doubly-incontinent, breathing problems, asthma, nutritional problems, severe weight loss, tissue paper skin, diverticulitis, severe osteoporosis, and depression (funnily enough!). She was not CHC assessed prior to discharge and frankly they just wanted rid of her as she was extremely difficult on the ward and refused care. We were told as she had assets she was to find EMI Nursing home and "self fund". After a catalogue of "nursing assessment checklists" with positive results for NHS Funded Nursing Care but negative for NHS CHC, I have been in dispute with CCG over maladministration from August 2009 - June 2013 when she was awarded NHS CHC (she died 3.9.13). They failed to produce copies of checklists for 14 months, two of these were completed without informing family and POA, one of the checklists, in our opinion, never took place at all as no paperwork was ever produced informing us of it, no followup paperwork, no evidence of a visitor to her on that date in Nursing Home Carenotes or Professional Visits form or diary. On constant denial of CCG of wrong doing, only now, after finally accusing them of fraud and potential criminal act, they have agreed to "fund a full assessment of the 4 years by a private company" who will look at the full time from scratch. Having spoken to this company they are not sure whether they will be able to source the old care notes, so not sure how they will be able to "assess" my Mother from 2009-2013 having never met her or possibly not seen any of the old notes. What are anyone's feelings about this and do you think this is a fair way for CCG to resolve issues after agreeing that they have maladministered my Mother's case? Cos presumably they are funding this new assessment and it will still have to go through their MDT panel once prepared, so will still be open to their own slant on things? Many thanks for any advice.

Angela Sherman July 1, 2015 at 9:06 pm

What a shambles on the part of the NHS. It sounds like has been so much maladministration in your late mother's case, Vanessa. If the care notes cannot be sourced, you could potentially argue that the NHS cannot therefore show that your mother was NOT eligible for CHC - and the NHS therefore has no basis on which to say that she was not their responsibility. Hope that makes sense.

Chris-G November 28, 2014 at 11:58 pm

Update to this:

I have had a few months long discussion with the Nursing and Midwifery Council in regard to an unregistered nurse. The nurse was not on the register in the name they used in 2010 and not even on this date.

I have been twisted and turned and even told that this unregistered nurse has "fitness to practice" whilst it being admitted that they do not exist.

I have been told all about another similarly named nurse that was investigated.

They refuse to link the two names. They refuse to pass me the names of the organisations that both names work for. They refused to tell me who told them all about the nurse that I had not asked about, so that I could ask that person to link the two names.

They demanded that I send my request upon headed notepaper.
They wanted to know all about a Police investigation involving the unregistered nurse before passing Freedom of Information requested data.

The investigation into the unregistered nurses Fitness To Practice took about 12 weeks.
The Freedom of information act was used repeatedly to deny me information because apparently and incorrectly, a name on a lawfully required and publicly published register is personal data and cannot be released.

I was also told that all that is required to identify a nurse is their PIN number; that would prove their registration.
When was the last time anyone was addressed by a nurse as "Hello I am XYZ123, I will be your nurse today"?
Has any of you ever received a signed document with a PIN number and not the nurses name?

In short even those in London offices of the NMC do not comply with their own or the nurses code of conduct...... so why should NHS nurses?

jim ward July 29, 2014 at 3:46 pm

My 87 year old mother was fast tracked for continuing healthcare and was placed in a nursing home. She has COPD, terminal Lung Cancer, heart failure and brittle bones, she can only walk with the use of a frame to the toilet, which is 2 - 3 feet from her bed and at all other times has to use a wheelchair.
The GP and the palliative care nurse who arranged her care, told me that my mother would be lucky to live no longer than around 6 months. In May of this year, which is some 9 months since my mother went into the home, she had an assessment by the continuing healthcare team (one person). She downgraded my mother in various catagories for example in her breathing, which went down from severe to moderate, she also asked her if she owned her own property! What has that got to do with my mother's health!!!! However, 4 weeks later during an appointment with her lung specialist, he stated that the tumour in her lung had grown and her breathing had worsened and was shocked at the assessment that had been done.
How can someone from continuing healthcare over ride the medical notes from a specialist!!
Has any one had a similar experience and if so can you offer any advise as to me trying to resolve the situation.

heather October 9, 2014 at 7:30 pm

Well said this is exactly what i told my mums assessor. She did not know what i was talking about and was certainly nat familiar with the framework.

heather October 9, 2014 at 7:21 pm

I disagree with your comment. Continuing care nurses are not adhering to the framework. They are failing to apply the primary health needs test". When i challenged this with my mums assessor she asked "what do you mean".

Angela July 29, 2014 at 8:13 pm

Many families ask the same questions, Jim. The multidisciplinary team assessment you mentioned is invalid because there was no one from the local authority present, and it sounds thoroughly flawed: http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/ Regarding funding assessors overriding specialist medical notes, you may want to write to the various medics/consultants and let them know their work is being undermined in this way. I imagine they'd be interested to know...

nessa July 29, 2014 at 1:13 pm

This is not just older people. I'm 45 - same boat, no help, alone, nothing, and they lie one after the other. For years I've been trying to get help. No further now. I could be dead here, no one would know. I was told by nurse I could have it; she went to her bosses and they said no, never et them. Social worker passes lies 2 lies, now nurse blames social worker, visa versa, but I'm alone, no help. I need a lot.

Angela June 27, 2014 at 3:31 pm

Jennifer - I'm so glad you've had a positive outcome, at least in funding terms. I think you've raised a really important point about how far to rock the boat without it leading to retaliation and attack from people 'within the system'. I can understand why you would want the nurse who supported you to be secure in her job, so that she can do the right thing for other families, too. It's awful that such a negative culture exists in the NHS. Great news about your father's funding, though.

Martin June 13, 2014 at 11:47 am

Chris,
Would it be possible to provide copy of Internal CHC Operations manual that you mentioned. I feel it would be in the public interest to publish it.

Chris Gallagher June 27, 2014 at 10:24 am

My father in law had just such an assessment (DST), done in October last year. The assessor might have thought that he was doing what they call "a light touch review". He turned up without anyone from the Council. He went ahead and did a full CHC assessment anyway.

Knowing me from other assessments he was perturbed by my lack of argument and my inane grin. But he took heart to make some shocking un-argued observations and then refused CHC funding. This was done to a mainly bed bound brain injured dementia sufferer with two leg amputations, double incontinence, arthritis, fear of falling, and an open MRSA wound in a poorly healed leg stump that was scheduled for even more surgery that could not be done until the MRSA had been got on top of. Needs not complex or intense or requiring continuity.... pahhh.

He obviously did not get it that he on his own was not a multi disciplinary team (MDT). I was not about to tell him because I could drag out the appeal process for six to nine months and even then take it to Independent Review if they argued. I am awaiting their response to the local review that was sent late only a few days ago.

The law and not just the Framework of rules insists that only a MDT can carry out an assessment. He was lost from the first second without even apparently knowing it.

Chris Gallagher June 27, 2014 at 9:59 am

The CHC Operations manual that was written by our PCT and put in place circa end 2011 is no doubt still in use by our CCG and it's subcontractor Commissioning Support Unit (CSU). I state that because the CEO of the CSU was/is a Government advisor and part of that manual appears within the revised 2012 National Framework. (I think it is the parts about escalating disputes to senior managers; which did not appear in the old framework).

Unfortunately, I was told that the manual was subject to copyright and therefore could not be sent to me even if I paid for it.

I was also told by the CEO directly, that as it only related to staffing rotas and how the computers worked that it would be irrelevant in any case.

I know that it was circa 200 pages long and that one page that I hold relates to avoiding the raising of domain scores to the highest that is argued by a MDT: in favour of passing the dispute to line managers to then decide the score.
However the framework has a default position in disputes and that is to simply raise the argued score.

As for the public interest, I was gently threatened that as it was subject to intellectual property rights that I had broken the law to have even sent a copy of the page that I hold to my MP and the Secretary of State for the NHS. (Go figure eh?). If I had all of it I would "publish and be damned" so to speak.

All the best.

Jennifer June 23, 2014 at 1:53 pm

Hi Angela, Jeanette
I have been rather busy the last 2 weeks after Dad's assessment. What actually happened was in May, Dad was assessed by an external assessor after I called the service and requested an assessment. This was done at home. Dad was denied funding after using the DST. He then suffered repeated falls a few days later and was admitted to hospital. After 3 weeks the CHC Nurse re-assessed him in hospital. (We didn't tell her about the initial assessment until after our meeting). He scored severe in two categories and several high marks in other categories. We have been awarded full funding (for the time being) and my Dad was transferred last week to a nursing home.
I think the experience with the CHC Nurse was very positive. She has since been a pillar of support and been on hand with help and advice even after her role was complete. The fact that Dad is so poorly and was scored so low on the initial assessment has raised concerns for her, not least because she knows the same person can do this to other families. At present, I have asked her not to raise an internal complaint as I feel I don't want to raise my head above the parapet at the moment, but also because I don't know how secure her position would be if she did so, and she needs to stay in that role for the benefit of other people like us.

Thank you all for your time with responding to this, it helped me with a stressful preparation which luckily went very well on the day.

Jeanette T June 10, 2014 at 1:32 pm

Hi Jennifer, I hope everything went well for you. Were they actually using the Fast Track Tool? If they were then as long as the clinician (consultant, registrar, surgeon, GP) who indicated your father should be fast tracked is able to comment reasonably as to whether your father has a rapidly deteriorating condition or may (please note the word 'may') be entering a terminal phase then "it is the responsibility of the appropriate clinician to make a decision" regarding CHC. Not the CCG. The fast-track tool means that they are recommending an "urgent package of care via the fast track process".
Para 100 on page 32 of the framework clearly states that
"Where a recommendation is made for an urgent package of care via the fast track process, this should be accepted and actionned IMMEDIATELY by the CCG. It is not appropriate for individuals to experience delay in the delivery of their care package while concerns over the use of the Fast Track Tool are resolved.
CCGs should carefully monitor use of the tool and raise any specific concerns with clinicians, teams and organisations. Such concerns should be treated as a separate matter from the task of arranging for service provision in the individual case."
In layman's terms the very fact that a clinician instigated and gave reasons for instigating the CHC Fast Track Tool means that the CHC should be put in place immediately, within 48 hours. No ifs, and or buts.
Furthermore, Para 102 says
" The purpose of the Fast Track Tool is to ensure that individuals with a rapidly deteriorating condition that MAY be entering a terminal phase are supported in their PREFERRED place of care quickly as possible."
The 2nd paragraph of the quote means that if the CCG question the use of the Fast Track Tool then this should not impede the CHC package of care being put in place. Their concerns need to be addressed separately. They should also "avoid the undue distress that might result from a person moving in and out of NHS CHC eligibility within a very short period of time"
Para 104 states "Where deterioration can be reasonably anticipated to take place in the near future, this should also be taken into account, in order to avoid the need for unnecessary or repeat assessments"
The doctor is asked for a prognosis, if available but the CCG is not allowed to put strict time limits in place to determine eligibiltiy.
Please also note that they cannot dictate where your father is to receive care. They threatened, and I use the word meaningfully, us by stating that they would put my mother into a care home and we would be able to do nothing about it, unless we agreed with them, which would have meant no CHC. At a time when she was receiving 1-on-1 24-hour care in a hospital setting. Later mum was fast-tracked but we feel that her health significantly deteriorated by the constant delays the CCG put in place.
Good luck and remember that the CCG cannot say no to CHC if a person is fast-tracked by a clinician.

Angela June 5, 2014 at 6:00 pm

If it's a DST, this can only be undertaken by a Multidisciplinary Team (MDT), not just someone from the hospital. The MDT should comprise: a Continuing Healthcare nurse assessor who has read and understood the National Framework guidelines, understands the law and knows how the assessment process works; a social worker (or someone from the local authority) who understands the legal limits beyond which the LA cannot take responsibility; yourself and/or other family member(s); a hospital nurse or ward sister currently involved in your father's care and familiar with your father's health and nursing care needs; a mental health nurse if appropriate (including if your father has dementia); plus input from every other relevant clinician, therapist, nurse, doctor involved in your father's healthcare. While your father is in hospital, funding is not an issue. If he goes into intermediate care/rehab, he should not be charged for this. If you feel the DST is not completed properly and the assessment not carried out properly, or if there is no properly constituted MDT, you can insist it is done again.

Chris Gallagher June 6, 2014 at 8:14 pm

Our last IRP criticised the NHS for doing what you wrote:-

"If you feel the DST is not completed properly and the assessment not carried out properly, or if there is no properly constituted MDT, you can insist it is done again."

They insisted that just re-doing the assessment several months later and ignoring the interim period in which funding was denied, was to deny the grounds of our local appeal without addressing them. As such the IRP recommended that the period be paid for by the NHS. They then overturned the re-assessment too. It took 27 months to sort out. That entire period had to be paid for retrospectively by the NHS.

Jennifer June 5, 2014 at 7:31 am

Hi all, I have a question as my father has a second CHC tomorrow, this time fast tracked as he was admitted to hospital 3 weeks ago and remains there at present. I fully understand the comments above as our family have been faced with the stone-walling of the assessor and CCG once already, we were basically told my fathers condition, not asked and funding was refused. From anyone's experience, what is our position now whilst he is an in-patient if he is refused again? Are the CCG obliged to pay for his care throughout the appeal process? Can they move him to a nursing home and make us pay for his care if we refuse to sign his discharge?

Dad suffers with Parkinsons and late stage Parkinson's Dementia with Lewy Bodies. He is now unable to walk, doubly incontinent, can't express his needs or make any decisions for himself and is unable to communicate much, he is basically bed-bound.

Thanks in advance for any help on this.

Angela June 5, 2014 at 12:51 pm

Hi Jennifer - if your father is being fast tracked, the funding decision should be made there and then, and care/care funding put in place in 48 hours. This may help: http://caretobedifferent.co.uk/continuing-care-fast-track-assessments-how-to-get-a-quick-decision/

Martin June 3, 2014 at 12:14 pm

Kay, I am wondering where you are told that the eligibility for CHC is "complex, intense and unpredictable needs" It is certainly NOT in the National Framework or its accompanying guidance notes.

Your duties as assessor/MDT member are however clearly set out.

National Framework for NHS CHC Nov 2012 -Page 76

f) Having completed the care domains, the MDT should consider what this information signifies in terms of the nature, complexity, intensity and unpredictability of the individual’s needs. It should then agree and record its recommendation, based on these concepts, providing a rationale which explains why the individual does or does not have a primary health need. It is important that MDT members approach the completion of the DST objectively without any preconceptions that specific conditions or diagnoses do or do not indicate eligibility or fit a particular domain level without reference to the actual needs of the individual.
g) The recommendation should then be presented to the CCG, who should accept this, except in exceptional circumstances.

Also
National Framework for NHS CHC Nov 2012 -Page 78

It should be remembered that, whilst the recommendation should make reference to all four concepts of nature, intensity, complexity and unpredictability, any one of these could on their own or in combination with others be sufficient to indicate a primary health need.

Furthermore, The NHS CHC Standing Rules Regulations ( to which you are legally obliged to follow ) state that..

In deciding whether a person has a primary health need, it must consider whether (in totality) the nursing and other healthcare needs are beyond LA powers ('incidental or ancillary test' and 'nature of social services test') and, if so, it must find that the person has a primary health need.

See also Practice Guidance
National Framework for NHS CHC Nov 2012 -Page 82
PG 40 What should the role of the CCG decision-making process be?
and
PG 41 What are the ‘exceptional circumstances’ under which a CCG or panel might not accept an MDT recommendation regarding eligibility for NHS continuing healthcare?

Angela June 4, 2014 at 8:23 am

Link to Standing Rules: http://www.nhs.uk/choiceintheNHS/Rightsandpledges/Waitingtimes/Documents/nhs-england-and-ccg-regulations.pdf

pete May 30, 2014 at 5:48 pm

Back to disappearing notes .... we had a very diligent nurse assessor to lead the assessment for my mum ..... she took comprehensive notes, hospital staff gave their input and at the end she doubted that the CCG panel would need to be involved - so obvious was it to her that mum qualified for CHC.
Then she went on holiday for a week (same day) and her clinician boss not only put it to the panel, but ensured that, on her return, the nurse assessor did a complete 180 so that CHC could be refused!
I later had a face 2 face with this panel and the clinician had a very poor command of English - Social Worker was unknown to me and the aforementioned Nurse Assessor looked extremely embarassed throughout - not helped by the fact that she had to 'assist' with her boss's inability to understand what I was saying.

And the assessment notes? Originally some feeble excuse relating to data protection and 3rd parties (I am Lasting POA). I must see what the latest excuse is because when I receive the official notification that local appeal has upheld decision to refuse (Evidently the Chairperson is on holiday), It'll be off to NHS England for round 3 ... or is it 4?
Pete

Chris Gallagher June 2, 2014 at 4:41 pm

They cannot refuse to pass them to a non LPA holder if the person is their representative. It is also reasonable under data protection rules for a person close to the data subject to request the documents be sent to the person. That might be required if the patient can be argued to have cognition and the ability to deal with the matter themselves. Who they give them to upon their receipt is the patient's business.

Also, the national framework insists that representatives are sent the documentation and correspondence instead of the patient or even as well as the patient perhaps.

It is also the case that subsequent assessments should include copies of any and all assessments available and copies of them should be give to you at those times. Data protection bah!.

Jeanette April 11, 2014 at 10:50 pm

My sister met with CHC assessor. Apart from them not knowing the framework and contradicting themselves they were in the description my sister gave of the experience getting quite personal and acting unprofessionally during the meeting. They also appear to have lied outright.

Angela March 20, 2014 at 10:16 am

Thanks for your comment, Kay. It's always good to hear about assessors who do stick to the guidelines and where the person in care (and their representatives) are treated well and fairly. There are, sadly, also many cases where this does not happen. It is not usually a question of families not understanding the guidelines or a lack of evidence. Families are instead faced with delay, obstruction, inaccuracies and omissions in assessment notes, misleading information, assessors who have no experience of the specific health needs being assessed, intimidation, correspondence being completely ignored, genuine health needs being played down, inappropriate questions about money, verbal intimidation towards family members, and so on. They may not happen in your assessments, which of course is really good news, but these things are very much happening in so many other assessments across the country, and that is why there are so many angry families and many complaints about NHS Continuing Healthcare.

Chris Gallagher June 2, 2014 at 4:34 pm

Hi Angela, You said "genuine health needs played down".

The care plan that is submitted to the nursing home is based upon the needs that are played down. So much so that a recent brief dismissal of my mother's choking was played down with the words if you want the SALT team to have a look then you will have to ask for them. It was accepted but belittled in the nutrition domain but ignored as causing a risk to breathing.

The home's nurses after 9 months and several reminders from me have yet to ensure that a SALT assessment is carried out. The care plan makes no mention of choking as an issue yet it is reported regularly.

Kay Harrison March 19, 2014 at 7:51 pm

as a continuing care assessment sister i am sorry that so many feel they have had a bad experience. we work to the frame work and guidlines laid down by the department of health. all decisions have to be evidenced based - if we do not have the evidence from the care home/district nurse/hospital ward etc to support a level we can score it as such. our recommendations are overturned if we can not duly supply this. the CCG have the ultimate sign off and expect this evidence and rationale. we are qualified healthcare professionals and and as such i find it very disrespectful when accused by relatives as frequently is the case of dumbing down the levels in order to 'prevent funding'. this is not our directive. if someone meets the criteria ie. has complex, intense and unpredictable needs they meet it and i ensure that i have the evidence to support this so my recommendation is not overturned by the CCG as can happen if they feel the evidence is not to support the criteria. i appreciate it can be hard for relatives to not understand how their severly disabled relative can not have a primary health need but this does not in itself make their needs complex. the tool is needs led and not based on diagnosis. the only thing i can add is something a relative said to me - they understand to meet the criteria meant that their loved one needed to have very complex and intense needs which meant they were very ill and they would rather have their relative requiring less input, being stable in their needs and pay for their care than have the continuing care funding.

Chris Gallagher June 2, 2014 at 4:25 pm

Hi Kay, I am so glad that you wrote this.

You wrote. "we work to the frame work and guidlines laid down by the department of health."

I am willing to bet that you also work to an internal CHC Operations manual. Pages that I hold of such a manual contradict the National Framework. For example:-

Where does it state that if assessors cannot agree on a domain score, that the matter should be escalated to senior managers so that they decide the scores?
Yet the framework insists that the scores should simply be raised. Only then can management become involved. Then they can act to try to ensure that it does not happen again. They cannot issue a domain score.

You said "if we do not have the evidence from the care home/district nurse/hospital ward etc to support a level we can score it as such. our recommendations are overturned".

Once again; the framework does not permit managers to alter a DST: To disagree with your recommendation: To act in any gate keeping capacity whatsoever. Yet you have said that they do and as such you do what they want you to and not what you are supposed to do.

You are entitled to assess whilst using your professional opinion when it suits, so that the wording within the DST can be ignored much to the consternation of representatives but when it annoys your managers then they can ignore your opinions.

I have records of initial funding at certain scores and the assessor's wording. Then with a progression of gradually rising scores and still very similar wording written by assessors in each DST, my mother is denied funding. That is nothing for assessors to be proud of.

It also means that the legally required test of the council's remit to provide the care is not being done properly.
Consider this.... If a certain set of scores is defined in the first instance, to put the care beyond the legal ability of the council to provide, then with higher scores and very similar written observations the care should still be beyond the legal remit of the council. That is regardless of anything that the NHS wants.

On a patient case by case basis, the domain scores actually form a base line of the level above which the council cannot legally provide nursing care. For them to accept it with raised scores indicates that the NHS and the council are not applying the remit test, that is also the task of the MDT assessors.

You wrote. " they understand to meet the criteria meant that their loved one needed to have very complex and intense needs which meant they were very ill and they would rather have their relative requiring less input, being stable in their needs and pay for their care than have the continuing care funding."

Pamela Coughlan does not in any way match what you wrote. Her legal action is the main reason for the Council remit test and even the existence of the National Framework. She can talk on the phone, order her meals and eat them with minor assistance, she can go out in her wheelchair. She reads, watches TV, converses with others. She was not at deaths door when she won. Why should anyone else be?

What is more surprising is your consideration that being stable which might well be because the needs are being "well met" is an indication that the patient does not have the needs at all.

Much of what you wrote indicates to me that you have been trained to keep your job and not actually to conduct the process in the way that it is written down.

Sorry. I do not intend to insult. But you must surely be aware of how insulted most people on this site feel by the actions of the NHS and the councils in their constant twisting of the rules to get what they want whilst continually denying that there is any financial consideration to the process.

Once again I really do thank you for your insights. They actually match what CHC assessor acquaintances have complained to me about over the last four years.

Martin Terry-Evans January 27, 2014 at 8:07 am

Unfortunately Don it seems that CHC assessors feel that they are immune from the law. (In particular the "Standing Rules & Regulations" which carry the force of LAW)

Don January 26, 2014 at 11:46 am

This all sounds very familiar. Initially my mother had a checklist completed, without our knowledge, that concluded she was "intelligent and articulate", despite the fact she had just come off a formal mental health section for advanced dementia. According to my 88 year old mother's medical records she has dementia, heart and kidney failure, is doubly incontinent and has severe osteoporosis, which has resulted in several spontaneous fractures. When she was discharged from hospital, following a leg fracture, she had a Clinical Frailty score of 7 (completely dependent). Before discharge she had a DST (at our insistence), attended by a Consultant, GP and Ward Sister. It was agreed that her needs were severe and qualified for NHS Continuing Care. The CCG Team, however, said that "she did not meet the requirements" but that they would supply "emergency funding", without prejudice, until another DST assessment was made.
This duly happened, where someone described as a "Social Care Worker" challenged each and every "severe" category, in a very hostile manner and succeeded in downgrading them. Apart from the Care home nurse (responsible for my mother's daily care) , who disagreed with the downgrading, there was no independent medical input, no doctor, anything.
How is it possible that a non-medical person, who has seen my mother once for 30 minutes, can challenge and undermine decisions made by qualified medical professionals who were responsible for my mother long term, day to day, care and treatment?

Angela December 22, 2013 at 11:29 am

Thanks for your comment AMT. I'm not aware myself of anyone who has contacted the GMC. It wouldn't surprise me if the result was the usual thing of people within the system closing ranks - but it might nevertheless be worth approaching them.

Chris Gallagher June 2, 2014 at 3:45 pm

I contacted the social services adult care team when mum's GP's were exposed as altering her med's from one costing (according to NICE), circa £9.50 a month to a completely different drug (£1.38 a month), that her consultant had stopped a year or so before because it was killing her.

This was done days after the BMA wrote to all GP's warning them not to do this in response to the new CCG's who were memo-ing GP's to make them reduce prescribing costs.

The GP's closed ranks and the adult care team investigated the nursing home instead ?????? They still have not explained their actions that required us to threaten the care home with a law suit if they continued to administer the wrongly prescribed drugs. That made us popular...... My Police contacts also think that it might have been an assault by the GP's.

It took direct application to a psychiatric consultant to get her back on the correct med's. This took four months or more to get her back on drugs that were helping her.

So it is likely a complete waste of time complaining..... especially when one considers that most CCG's now have a set of rules that they call The Persistent and Vexatious Complainant Guidance so that if anyone attempts to use external organisations to complain; they can then refuse all correspondence with the complainant.

I include a link.... http://www.neneccg.nhs.uk/resources/uploads/files/Management%20of%20Persistent%20_%20Vexatious%20complainants%20v6%20Published%20Feb%202014.pdf

Have a look. Apparently even answering their correspondence (if they consider it unnecessary perhaps), is grounds to refuse to deal with you.

They define as follows
"A prolific complainant is someone who raises the same issue despite having
been given a full response and may display certain types of behaviour:

{Of course their idea of a full and final response is usually wrong}.

• Complains about every part of the health system regardless of the issue
• Seeks attention by contacting several agencies and individuals
• Always repeats the full complaint
• Automatically responds to any letter from the CCGs
• Insists that they have not received an adequate response
• Focuses on a trivial matter"

I have been refused correspondence rights twice. Previously because I threatened to complain about a staff member. The old PCT also threatened to send their security team to see me if we did correspond. Then we won two IRP appeals. So much for being wrong and needing to be ignored!

More recently, because the Police are investigating forgery, they refuse all correspondence from me. This has made it impossible to appeal another family member's loss of CHC funding because they have been told at Director level to refuse "any and all correspondence".

They instead insist that I should correspond with the CCG directly. (It is a CSU that refuses to behave). Yet every contact detail, is for their own organisation and not the CCG.

I wish anyone going through this... all the best.

Angela December 22, 2013 at 11:25 am

Thanks for your comment Martin. That's a hugely distressing situation. If you don't get anywhere with the safeguarding adults team, you may need to speak to a legal expert about the negligence side of things. Email us if you need any contact details. Regarding financial abuse, many families are asking the same questions about the seemingly routine attempts by the NHS to take people's personal assets to pay for nursing care. Some families contact MPs, some go to the press - it will depend on your personal situation. It's an appalling situation all round - for so many.

Martin Terry-Evans December 21, 2013 at 2:35 pm

After a very lengthy and arduous battle we finally obtained CHC on FastTrack basis for my Mother in Law.

Even then our local CHC/CCG tried to force us to accept a totally inadequate package of care which was only resolved after the persistent intervention of the hospital matron.

The blatant disregard of the National Framework by the CHC assessors and their continual delaying tactics undoubtedly led to Mum being kept in an inappropriate acute ward where her condition progressively deteriorated to the extent that she was considered by the consultants to be 'terminal'.

During the delays caused by the CHC obstructional practices which kept mum in hospital she contracted cellulitis on two separate occasions
and the Norovirus on another occasion.

More importantly Mum also developed very serious bed sores on her left foot which are now considered by the consultant to be untreatable.

This we are told is under investigation by the Safeguarding adults team but despite email and repeated telephone calls we have been unable
to discuss our concerns or provide the documentary and photographic evidence of lack of care which we have.

Does anyone have any experience of whistle-blowing to their local safeguarding adults team with regards to either:

1. Serious damage to health caused by CHC obstruction/delays/maladministration.

OR

2. Financial abuse/Attempts to defraud made by institutions such as the CHC/CCG Team

AMT December 10, 2013 at 8:30 am

We are just at the beginning stages of CHC assessment for my father. Already much mis-information from Social Services and NHS combined. Very useful to read everyone's comments. I'm curious to know if anyone contacted the GMC (general medical council) on any of the muck-ups ? and if so, was there any positive response, or was it just more of the same ?

Chris Gallagher June 2, 2014 at 3:19 pm

Hi AMT, Once of my mother's assessors does not even appear on the Nursing and Midwifery yet she is recorded as being a nurse on all of the documentation and still I can't get them to behave.

That is not a matter of opinion or professional judgement, that is a fact. Yet no action is taken because to do anything might mean they loose the money.

So much for the matter not being financially motivated.

Angela December 6, 2013 at 8:47 pm

I agree, Lisa. If the lies, maladministration, obstruction, stone walling and blatant breaches of guidelines happened in funding cases involving sick children, the newspapers would have a field day. Instead the financial abuse of our oldest generation, and their families, goes on with seeming impunity.

Lisa Thurlow December 1, 2013 at 11:36 pm

Getting a proper initial CHC checklist done seems impossible to me! Had one a year ago for my Aunt and the nurse had completed it before we arrived at her care home for the appointment! Have made a formal complaint to Norfolk CCG about this and the erroneous information recorded on the checklist. Have been trying to get another checklist done asap as my Aunt's health is declining yet further and requires greater care and so far have managed to leave a message with the Single Point of Referral (whatever that is), requesting said checklist be done. Nearly a month later, I have chased but still have no date for this to be done. If this issue concerned a child's health, the world would be in uproar, but because it usually relates to elderly, seemingly invisible human beings, the attitude from the NHS is one of utter complacency.

Angela November 3, 2013 at 8:02 pm

Peter - your description of the DST is one I'm sure many families can relate to. There also seems to be an increasing incidence of assessors taking funding away pretty much as a matter of routine. Anne - your question about how bad someone has to be to qualify is one that many people ask. It's unbelievable. Wishing you well with the appeal.

D southern October 26, 2016 at 10:41 pm

I actually work in a care home in have done for 17 yrs with dementia patients, so my heart goes out to all of you who have struggled, as I hope someone looks after me as good as we as carers do within our home when we are old. Ando doesn't forget we were all young once and need the time and patience of someone to care for us when needed. That's how it should be, it doesn't just stop because we age, we should be cared for as our families care for us. From us within our home is how we see it - a home from home is how it needs to be and to be funded.

Anne November 1, 2013 at 10:35 am

My 86 year old mother was discharged after 8 months from a mental hospital, with, according to her doctor, only 6 to 18 months to live. She has severe behavioral problems, severe dementia, doubly incontinent and has diabetes 2, registered blind, unable to walk and hard of hearing, but was rejected for NHS CHC. She now is unable to feed herself and becoming very frail. I can’t understand what else does a person who has contributed to the NHS need to have in order to get CHC funding? I agree this whole business of trying to get NHS CHC is extremely difficult and very stressful at such a very sad time. This is now in the hands of solicitors for appeal... but will it just be thrown out again!

Peter October 31, 2013 at 6:19 pm

A very worrying tale but has echoes of my mother's current situation. I'm particularly concerned that a public body can be allowed to behave in contravention of their own rules with seeming impunity.

My own mother was granted CHC funding in 2009 (after a 6 year wait during which we were self funding).

In 2012 the NHS undertook a CHC "routine" assessment and it soon became obvious they had come to take her funding away.

The NHS guidelines are very clear. The time from assessment to decision should not normally exceed 28 days. They took a YEAR to tell us (surprise, surprise!) my mother's funding was to be withdrawn.

Apart from the most obvious fact the assessment was far from current, the DST was a masterwork of selective "evidence", untruths and a narrative from which I wouldn't even recognise my own mother unless her name was at the top.

When asked why they could so flagrantly contravene their own guidelines, I was told as my mother was formerly self funding, the rules didn't apply! (But of course couldn't explain where this was actually stated - in other words: they just made this bit up!)

Thank you for the article - I wish the people in the story every success.

Angela October 31, 2013 at 3:36 pm

I couldn't agree more, Richard. You describe the situation so well. Well done for pursuing your case to the end. That can take a huge amount of resolve, energy and stamina and, sadly, not everyone is able to do it. And, of course, that's how the health and social care authorities continue to get away with illegally forcing people to pay for care. Thanks for your comment.

Richard Shannon October 31, 2013 at 3:17 pm

Over the last couple of years, I have had more than my fair share of dealing with the Continuing Healthcare Assessment. My late mother was in Hospital when suffering from septic arthritis of the elbow,, after she was operated on, it was made abundantly clear to my father and myself that we had to get mum into a care home. Mum was assessed fro chc funding (she was deaf, almost blind, incontinent and bed ridden) the initial assessment was carried out by the Ward Staff, no problem, but then came a CHC Assessor who changed the documentation, when she was tackled by me on this, she retorted that only her opinion counted, the Ward Staff do not enter into the equation, and we were informed very rudely, that my mother did not meet the criteria. To cut a long story short, we met with the Head of CHC after going through the process at the hospital, we informed her in no uncertain terms, we will see you in the High Court, we are going to take this all the way, if heads roll throughout the system and in government, then so be it. In the end, they coughed up with the reasoning that it was such a small amount, that it was not worth arguing about, we are talking her of over £70,000, a considerable amount of money. The only bit that I will add is, it is the system and the tick box criteria that is wrong in its entirety and should be changed. Again, this would sift out all those paper chasers and bean counters that in effect do not have a job, but they have built little castles around themselves so that they are protected and they feel that if they keep their heads down, they will not get noticed. This is all within the system that requires to be overhauled sooner rather than latter. In effect, our case has ended but it is those that are currently battling the system that I feel sorry for, it is those that will continue to have to pay mega money for care when the state should be paying.

Chris Gallagher June 2, 2014 at 3:14 pm

Ditto Richard. I have just had one of the 4 heads of NHS England, (The bosses of the whole), trying to justify the actions of her subordinates to my MP. She has basically copied letters from subordinates without showing any actual investigation other than taking their word that what they did was within the rules.

We have forgeries and altered documents that have yet to be seen by anybody at the council or the NHS. (They refuse to meet or appoint anyone to see them). Even their Counter Fraud specialists have not seen them. Yet at every turn they deny that forgery has happened.