Part 2 – Revealing Insights From A Continuing Healthcare Nurse Advocate…
This is the 2nd part of an article from Nurse Andrea (not her real name) giving examples of some NHS antics and flawed assessments.
If you missed Part 1, you can catch up here: Part 1 – Revealing Insights From A Continuing Healthcare Nurse Advocate…
No:7 Underscoring the Care Domains and the 4 Key Indicators when completing the Decision Support Tool (DST)
Andrea: “When completing the Decision Support Tool, it is very clear that, despite all the efforts in amending the National Framework, professionals are interpreting the descriptors in the 12 Care Domains in different ways. It is all too subjective, and it really depends on who has been appointed by the CCG on the day to conduct the assessment.”
Scenario: “An 85 year old gentleman was someone who had always been of large build and his BMI was assessed to be in the obese category. Over a period of 3 months he had lost in excess of 2 stone in weight, but his BMI remained high. The care facility was nutritionally enriching his diet (adding cream, butter etc to meals), were providing snacks in-between meals, and reminding him to chew and swallow his food. Whilst he had the ability to feed himself (provided the food was prepared for him), staff were required to assist as it was taking an increasing amount of time to eat his meals (because he would forget what he was doing). They were spending the vast majority of the day taking food to him and prompting and assisting with his intake. Despite all this, he continued to lose weight.
The nurse argued that his needs met the ‘No needs‘ descriptor in the DST. Her rationale was that he was still eating and drinking and could feed himself if he wanted to, so his needs were being met.
After further discussion she then decided that perhaps a ‘Low’ level of need may be more appropriate, as after all, he did get assistance from the carers.
When I questioned her about the significant and continuing weight loss, she said that was irrelevant as he was still in the obese range of BMI, and that in her opinion he was not nutritionally at risk.
I pointed out to her that this man was not intentionally losing weight. He was not on a diet, and there was nothing documented by health professionals which suggested there was a need to lose weight. In fact, he had been referred to the dietician who had suggested enrichment of his diet!”
Andrea explains that the descriptor of ‘High’ needs, therefore, was appropriate as it states: “Nutritional status at risk and may be associated with unintended, significant weight loss”. This patient was losing a tremendous amount of weight despite all the additional efforts to supplement his diet and maintain his weight.
“When it came to discussing the 4 Key Indicators in conjunction with the food balance charts, not only was CCG’s assessor grossly underscoring the level of need for this Care Domain, but she did not feel that the fact he was being fed approximately every 30 minutes was an intensive level of support!”
Our comment: The above is a typical example of what we often hear from families across the country and comes as no surprise to us. The assessment process is entirely subjective which allows inconsistencies depending on the CCG and the experience (or ‘agenda’) of their appointed assessors on the day. Such subjectivity facilitates the opportunity for some CCGs’ assessors to underscore a patient’s needs and so directly affect the outcome as to whether CHC Funding will be recommended or not.
In a situation like Nurse Andrea’s above, it can be very frustrating to see that the appointed CCG assessors clearly don’t understand the patient’s needs and the correct application of the National Framework, or else appear to deliberately turn a ‘blind eye’ to intense, complex and unpredictable healthcare needs and play them down to affect the outcome as to eligibility for CHC Funding. It smacks of incompetence at its lowest level, or more sceptically, deliberate foul play at its worst – purely to protect the CCG’s financial budget.
No:8 Problems with incomplete care records
NHS Continuing Healthcare assessments are evidence-based.
Unfortunately, the necessary evidence is not always provided within the care records. These omissions could be deliberate or simply due to a lack of time and resources.
Nurse Andrea says, “The most common occurrence of this is the Domain for ‘Behaviour’ and which frequently raises the most arguments when completing the DST.”
“I visited a care facility to carry out an independent assessment on a lady (let’s call her, ‘Mrs X’) who had been assessed by the CCG as having ‘Low’ needs for Behaviour. On examination of the care records, it was documented that during the first three months in the care facility, she had hit, scratched, bit, and pulled the hair of a carer when trying to deliver care three or four times a day. When taken to the dining room she had thrown drinks, food and cutlery at other residents, screamed out throughout the meal, and generally disturbed other residents. She was reviewed by her GP and by Mental Health Services, and had her medication titrated in an effort to manage her behaviour and reduce her symptoms. After some five months there were no incidences documented. However, I noted on one day her records said, “she’d had a really quiet day.”
“I was in an adjoining room reading the records and gaining evidence prior to meeting with this lady. There was a lot of screaming and what sounded like objects being thrown around a room. I asked the nurse who was with me, what was going on. She said, “Oh that will be Mrs X. She’s always like that.” I pointed out that there was no documentation of these incidences and no evidence of further referral for advice or management. She responded that they have got used to Mrs X. Mrs X was already in an EMI (Dementia Behavioural Unit) so there was nowhere else for her to go.”
Andrea says,“I understand that if the staff continued to document her behaviour and every single episode, they would be there constantly writing and would not have the time to deliver her care. However, for the purposes of assessment, unfortunately, this lack of critical evidence and documentation will not help Mrs X’s case to get CHC Funding.”
Our comment: Generally speaking, if an individual’s daily needs are not written down in their care records in ‘black and white’, then it can become an uphill struggle to try and argue the case for eligibility for CHC Funding without written corroborative evidence. The absence of written documented evidence of healthcare needs just makes it easier for the CCG to reject funding.
No:9 Misusing the Fast Track Pathway
“One of the most widely misused tools is the Fast Track Pathway tool. This tool is used to fast track someone and get quick access to a package of care from the place where they are (most frequently hospital) to the place they ‘want to die’.
It is supposed to be used when ‘an appropriate clinician’ has assessed an individual to be at ‘end of life’ and have a rapidly deteriorating condition. Hospitals are under-staffed and there are not enough beds for the acutely unwell. Once an individual has reached a point in their care where there is nothing acute that can be done for them, then they are sent out into the community for ongoing care.
Some clinicians are regularly telling families that their loved one is being ‘fast tracked for NHS Continuing Healthcare’, and to go and find a bed in a care facility, and not to worry as the NHS are picking up the bill. However, what they are not telling people is that, following discharge from hospital they will be reviewed again in 3 months and undergo another full CHC assessment to see if the package of care in place is working. In a large proportion of cases, if the individual no longer has a rapidly deteriorating condition or does not have other healthcare needs that meet the criteria for ongoing NHS Continuing Healthcare Funding, then CHC Funding will be withdrawn – leaving the individual to pick up the ongoing bills for their care home fees.
The majority of those fast tracked are placed in aesthetically pleasing care facilities, chosen by families as a final resting place for their relative. Some care homes are priced out of reach, which means that the family have to find an alternative home in a more affordable price range to relocate their very frail and vulnerable relative. Often this upheaval is very unsettling and causes them (and their family) great stress and anxiety, at the prospect of being uprooted and moved.”
Our comment: Abusing the Fast Track Pathway has become an effective and simple way for the NHS to discharge patients into a care facility and unblock hospital beds. Families are no doubt relieved that CHC Funding is granted for their frail relative who is at at ‘end of life’. But, if CHC Funding is immediately withdrawn following reassessment at 3 months, it can cause huge distress, financial worry and resentment.
No:10 Best Interests decisions
Andrea says, “What we have to bear in mind here is that the majority of residents in a care facility may be frail and elderly, and unable to make these choices for themselves.”
A ‘best interests’ decision is made on behalf of an individual by a team of professionals, for example, in circumstances where care cannot continue be delivered in the individual’s own home – perhaps because they need 24 hour care. So, if these professionals have made a best interests decision that the individual has no choice but to go into a care facility, then why do they not have a health need and why should they have to pay for their care?”
Summary:
Andrea: “Many individuals do not understand the CHC process and do not realise that their loved one may well have been inappropriately assessed by a process which was designed to be consistent and robust, open and transparent for all, and to make healthcare easier to access – a system which delivers healthcare at no cost to the individual by an NHS service.
However, the National Framework remains open to individual subjective interpretation, and is a barrier to an individual receiving the free healthcare which they require as a result of long-term medical conditions which have given rise to ongoing healthcare needs.
It is confusing, not only for individuals, but also for the many professionals who have been commissioned to impose it. It is time for change and a more prescriptive, objective clear concise and fairer process.”
CTBD wish to thank ‘Andrea’ for getting in touch and setting out her forthright views and for sharing some of her experiences with us.
If you are going through the NHS assessment or appeals process and want help, buy our book, “How to Get the NHS to Pay for Care” or contact us directly on 0161 979 0430 or visit our one-to-one page direct professional support.
My dad passed away from Dementia you in January 19. We managed to secure NHS funding from the April 18 to his passing in January. .A best interest decision was made by Social Worker in Sept 17 that he could no longer be cared for at home with carers and needed nursing care. He was put on end of life care in January 2018 but they then changed their mind as he “got better”. Is it too late to appeal the period from December 17 to April 18 which we have had to pay nursing home fees for?
Thanks for response, sadly didn’t pick up on that comment by Social Worker at the time.
Points 7, 8 and 10 really resonate with my relative’s case. Wrong and inconsistent height and weight measurements giving vastly varying BMIs, contradictory instructions regarding food supplements and the same issues regarding forgetting to eat, or just not recognising that a fork needed to be put in a mouth or a glass of water was there to drink. Absolute nonsense to read and so frustrating to witness when it was going on.
Similarly Behaviour. What becomes normal and often too tiresome to record is vital in showing Intensity and complexity. How can it possibly be fair that one resident who verbally or physically threatens staff or other residents (who may not be able to assess the validity of the threat) should go un documented and be ignored? Undocumented or poorly documented issues of Behaviour by my relative apparently didn’t account for the later discovered skin integrity issues. His choices not to be toileted, changed or moved were nothing to do with his sexualised and abusive behaviour the staff had to deal with if they tried. So they gave up recording it.
Don’t even get me started on Best Interests! On many frustrating occasions staff at all levels of qualification chose to ignore the fact there were registered and appointed Powers Of Attorney, and that my relative did not have capacity to make informed choices beyond sugar in their tea. Nonetheless, they carried on doing this throughout the period of care. One care home manager decided she was best placed to complete relative’s end of life care plan without reference to me and return it to the GP.
Honestly everything about NHS continuing healthcare is severely flawed .
Believe it or not I had a positive experience but having worked for the social services and remembering some of the experiences around this, I approached it in a different manner. Firstly I let staff know my previous background and I gave them the idea that I knew exactly how the system worked. A bluff really. I created friendships with staff, obtained your book to catch up and took a big interest in everything. I asked them if each incident had been recorded, why hadn’t notes on diet been updated on dad’s record. I apologized for dads behaviour. When it came to both meetings, I looked them in the eye and no he would not improve in a home because he had not stabilised, he continued downwards hasn’t he I said staring at the nurse. She agreed. Don’t be intimidated. I got full funding. They knew I would give them hell to get it. He died before he left there but that’s another story that involves an inquest! Good luck. Get the book and act big!
Point 7.
There is a massive difference between not maintaining your weight and being malnourished. You can be mega obese or skinny and not be malnourished. What “andrea” is failing to understand if the criteria for malnourished comes from regular sets of bloods where the pattern shows a downward trend in protein, vitamins, minerals. To the point where something like potassium is at a dangerous level to effect heart muscle contractions. Where the dietician is involved and you have several Malnutrition scores from the MUST tests. You comment on weight loss but the amount lost is significant if it’s over a given % of your starting body weight so an over weight person would need to loose lots (not just water) to be a few % of their weight but a thin person does not need to loose as much.
Adding butter / cream to your diet does nothing to address malnutrition its adding fat. What your body needs if malnourished is protein and that comes initially from supplements like fortisip from the dietician or doctor and then if more severe pro source from the specialist dietician.
Just adding every day food to food already eaten is not what is done if you are suffering from malnutrition. So as a lay person or even “nurse” you dont understand the medical side of the nutrition domain. It’s also not 1 of the things in the list for that criteria, it’s all or multiple. So unless someone has all the history’s of bloods, and different feeding interventions you just arent realising the difference between sustained ‘normal eating ‘ and what it takes to keep someone alive with a feeding tube (every half an hour sounds like heaven) you would get 25 mins between! And even more so feed via TPN when you have all that plus the sterile procedures need to hook, unhook, change dressings, keep feed at right temp, flush in right order and add in a massive risk of sepsis.
So while it might be upsetting as you think your relative deserves care you have no idea of how bad things could get on the nutrition scale at which point prompting someone to eat requires no specialist medical interventions.
My mother was in hospital recently I asked the discharge team to repeat a CHC checklist for my mother they just used the last one that was done 6 months ago. I am a nurse myself when Challenged so of the grading saying my mother had deteriorated and that they were not taking into account a holistic view I was shot down in flames with the case manager saying “it was taken on the day there was not need for taking into account what she was like on Other day” I was continually told there was no evidence of her acting as she did at home in the hospital. As a nurse I know we do not record accurately in the notes. we just give many things patients do or don’t do lip service and hand it over verbally good or bad. On question the night nurse she told me my mother had been aggressive toward her on more that one occasion this was not recorded in her notes. she also had not been feeding herself and staff were feeding her but recording they were assisting and prompting. when again i challenged this grading of a “C” that should of been “B”‘s the case manager told me it was her pin number and if she changed them she could lose it. There is no consistency its seems no hospital assessor uses the National framework as a guide they make decisions that suit them
During the last six months of mums life two separate care teams ( one in hospital and one in the community) recommended fast tracking, and both times it was overturned.
She was 86 and in the final stages of motor neurone disease. The process is seriously flawed.
Hi MW and all
Hope everyone is doing ok given the difficult circumstances.
Please can anyone help or share experiences?
My Father was granted the continued care and 1-1 Thankfully, but we are now in a position where the borough have decided to do monthly 1-1 reviews now
It is not clear to us the relationship between CHC and 1-1 how/why they both get reviewed separately.We have asked them recently again for a 1-1 policy and been told they are working on one. I asked previously in May 2019 and the clinical lead nurse replied to direct me to the below NHS CHC framework. The framework does not refer anywhere to someone in receipt of 1-1
Question – Please can I be sent any specific CCG policies regarding the process and procedures to be followed when an individual receives CHC including the review process ie an operating policy and anything regarding individuals who receive 1-1.
Answer – May I refer you to the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care October 2018 (Revised) which can be found on line. The CCG’s Standard operating policy is currently under review and I am unable to provide this to you. Information about reviews can be found in the framework from page 52 -54
However, if all they have is the framework and that is what we are being directed towards then surely the same rules apply? ie CHC reviews and 1-1 review:
181. Where an individual has been found eligible for NHS Continuing Healthcare, a review should be undertaken within three months of the eligibility decision being made. After this, further reviews should be undertaken on at least an annual basis, although some individuals will require more frequent review in line with clinical judgement and changing needs.
182. Bearing in mind the minimum standards set out above, a guiding principle is that the frequency, format and attendance at reviews should be proportionate to the situation in question in order to ensure that time and resources are used effectively.
So how is having a monthly 1-1 review in accordance with 182?
I was wondering if anyone had any personal experiences of this because the borough ( not sure if I should say who?).
and if anyone had any information on the 1-1 review process. We don’t know the criteria they are going by and so far just been told there will be 1-1 reviews but haven’t been supplied anything about the process.
Many Thanks
Tom
Has anybody had dealings with CHC P H B (personal health budget) we had a package review over 28 days ago and are still waiting tor the results then out of the blue they phone to say they want to come and discus PHB are they waiting to see if I go-ahead with P H B before the let me know the outcome of the package review.
Any help would be great
Barry
Do any of the very knowledgeable people who comment on this site know much about the PHSO?
Although my lovely Dad received CHC Fast Track funding in his final weeks (not of course without all the usual errors, misinformation and appalling behaviour by NHS staff) he was never assessed for CHC prior to this. This was despite repeated requests for a full CHC assessment. I felt I was banging my head against a brick wall. He had passed a long-fought- for Checklist but a full assessment MDT/DST was simply refused while the CCG insisted on waiting indefinitely until he was “optimised”.
After Dad died I complained formally to the hospitals, the local authority and the CCG (about failure to assess for CHC and maladministration of every aspect of the CHC process in addition to poor nursing care). They all pretty much said that they were sorry I was upset/dissatisfied but everything had been done properly etc etc. It took one hospital more than a year to send out this woeful response.
I passed my complaints to the PHSO and I confess that I genuinely, if naively, believed there would be an investigation and a simple acknowledgement that there had been maladministration and it was wrong and should not have happened.
After two years of delays and misunderstandings by PHSO staff I have been told that my complaint has been closed. A senior caseworker admitted it was because inexperienced staff who were part of the Joint Working Team dealing with complaints that included both a local authority and the NHS had simply failed to understand the CHC parts of the complaint. Their decision not to investigate and to close the complaint cannot, I am told, be overturned.
How can the PHSO make a mistake in looking at a complaint and refuse to rectify this mistake? How can the PHSO knowingly refuse to investigate a valid and serious complaint of maladministration? This is their job. It is the reason we have an ombudsman.
After everything that happened and the way my Dad was denied his lawful right to be assessed for CHC I am struggling to cope with an overwhelming feeling of helplessness. Nothing I did could make a determined CCG carry out a CHC assessment and now it seems nothing I say will make the PHSO look into what happened. I am in the unbelievable position of being told my only course of action is to complain to the ombudsman (chairman of the PHSO) about the PHSO.
The NHS remains untouchable, a law unto itself. It can do or not do whatever it likes and patients and their families are powerless. Now it seems the ombudsman can do as it likes too.
If anyone has any experience of the PHSO that they can share I would be grateful.
I strongly believe CHC funding should be scrapped as it is poorly administered by callous CCGs. The nurse assessors are clinically incompetent. The word “care” should be removed from CHC. It has nothing to do with care or need and everything to do with gatekeeping resources. If they scrapped the system and had a non means tested social care funding system we could save thousands on the pointless CCG bureaucracy The PHB is being pulled for my mother’s care for no rational reason. The CCG flouts the framework at every point. Of course I will go through the appeal process. The stress of dealing with this while my mother is in the active stage of dying is horrendous.