How do NHS Continuing Healthcare assessors describe care needs?
Check carefully what Continuing Healthcare assessors write down about your relative’s care needs
There are many hundreds of comments on the Care To Be Different website highlighting how some Continuing Healthcare assessors describe care needs falsely.
Indeed, families frequently pinpoint how care needs have been incorrectly detailed in NHS Continuing Healthcare funding assessments.
It’s a major problem – because the way that needs are described can make the difference between a person receiving the funding or not.
So what can you do if a Continuing Healthcare assessor is trying to play down your relative’ needs?
Read on for 3 helpful examples – plus some tips…
Families often have to argue hard to get some assessors to properly record the severity of need in each care domain. (The care domains are the categories of need assessed during the Continuing Healthcare assessment process.)
1) “Assistance”
Let’s think about the physical and/or cognitive ability a person may or may not have to dress and wash themselves.
Let’s call this person Mrs X and assume she matches one of these two descriptions:
- She has a degree of dementia that makes her incapable of making any practical decisions for herself or indeed doing anything for herself.
or…
- She’s had a major stroke that has left her severely physically disabled and unable to do anything for herself.
In Continuing Healthcare assessment notes for Mrs X’s needs, it would not be unusual to see the phrase: “Washes and dresses herself with assistance”.
Of course, the family knows that’s not quite right, but it just seems to be how things are described in Continuing Healthcare – and so it can go unchallenged.
Then of course, a CCG decision making panel reads those words and concludes that Mrs X’s needs really aren’t that great – and the decision is: no funding.
That’s a very simplistic way of looking at it, but it highlights the point.
The phrases “Needs supervision with washing and dressing” and “Needs assistance to wash and dress herself” are also very common – and again they do nothing to paint an accurate picture of the nature and extent of Mrs X’s actual needs.
“Cannot wash or dress herself without assistance” is slightly better, but it still implies Mrs X can help in the process in some way – which is unlikely.
More accurate is something like this:
“Mrs X needs constant care, day and night, for even the most basic things such as getting clothes on, maintaining vital oral health and protecting her skin from the impact of poor hygiene. She is unable to carry out even the most basic tasks for herself – in any way. Without such care and intervention, Mrx X would suffer painful injury, distress and potentially fatal skin breakdown.”
For someone with Mrs X’s needs this is an absolute minimum in the care that is required.
2) “A delight”
Another phrase we’ve seen in assessment notes is “Mrs X is a delight to look after.”
Not only is this wholly subjective on the part of whoever may find Mrs X a delight to look after, but it says absolutely nothing about Mrs X’s care needs.
Instead it implies that Mrs X’s needs are really not that great and everyone’s just having a pretty easy time.
This of course is rarely the case. And so the same thing can happen – the language used in the assessment notes contributes to the overall playing down of care needs.
And the result? No funding.
3) “Independent”
A further example of misleading language in care notes can be seen in phrases like: “Mrs X is very independent.”
We’ve seen this written about someone whose behaviour is extremely challenging, on account of the severity of their dementia. The person would rarely let care staff even touch them or provide the vital care they needed. This was not because the person needing care could actually perform the tasks themselves; it was, of course, because of their cognitive impairment.
And so describing them as ‘independent’ completely negates the degree of need here – and is likely to stop them receiving a ‘Severe’ or ‘Priority’ score in the Behaviour domain.
It is also hugely disrespectful towards a person needing care when assessors try to brush the person’s serious needs under a carpet of positive language.
Part of the purpose of the NHS Continuing Healthcare assessment process is also to flag up actual care requirements, and any attempt to play these down puts the person needing care at increased risk of neglect.
What can you do if Continuing Healthcare assessors describe care needs wrongly?
All of the above issues are of course often further compounded by the following:
- many care staff don’t have time to record proper care notes; in addition, many are not trained in any way to understand why the care notes are critical to the Continuing Healthcare process;
- families report that, in may cases, the actual assessors don’t have appropriate qualifications in the actual health issues they’re assessing.
Always ask to see the care notes in advance of an assessment, and make sure any errors, omissions or misleading statements are corrected prior the assessment.
In addition, always ask an assessor what makes them personally qualified to assess your relative’s care needs. Do they have specific medical, nursing and/or care knowledge and experience to do so? What is their specific expertise?
The National Framework on page 74 paragraph 30.2 states:
“Whilst as a minimum requirement a Multidisciplinary Team (MDT) can comprise two professionals from different healthcare professions, the Framework makes it clear that the MDT should usually include both health and social care professionals, who are knowledgeable about the individual’s health and social care needs.”
Note the word ‘individual’ too. It’s not acceptable for an assessor to have just a bit of knowledge about a broad health issue; instead, they must have appropriate knowledge about your relative’s specific needs.
Always check closely how Continuing Healthcare assessors describe care needs in a Continuing Healthcare assessment.
Challenge them about anything and everything that doesn’t seem right in the way they’re recording needs.
Insist that they include in the notes your own objections to what they’re writing.
There is a section on page 18 of the Decision Support Tool (the form used in the full assessment for NHS Continuing Healthcare) that allows the family to add comments about the assessment. It’s headed:
“Individual’s view of their care needs and whether they consider that the multidisciplinary assessment accurately reflects these:”
If you feel that the notes made by the assessor(s) do not accurately reflect your relative’s needs, be sure to write that on that page – and use additional paper if needed. This is particularly important if an assessor refuses to note your own comments in the individual domains.
Read more about the language used in NHS Continuing Healthcare assessments:
How NHS Continuing Healthcare assessors are rewriting the dictionary
Check the language used in Continuing Healthcare assessments
How assessors play down health needs in Continuing Healthcare assessments
My mother has had three strokes. The nurse assessor came alone. There was no social worker. The manager and I stated that my mother was breathless. The manager felt her needs were high , but the nurse assessor ticked low. I’m appalled as this is the second time we’ve gone through a Decision Support Tool. My mother is unable to feed herself, nor dress herself , nor say a full sentence. It is worth noting that my mother self funds and pays double that of Social Services residents.
My father suffers from vascular dementia and is in a nursing home bedridden and completely unable to do anything for himself, he sleeps most of the day, cannot walk or even turn over in bed, he cannot eat or drink unaided and his fluids have to be thickened so that he does not choke. He has lost a vast amount of weight and is now shockingly skeletal. He scored 4 As, 3 Bs and 4 Cs on the initial Continuing Healthcare (CHC) assessment but when the Multidisciplinary Team (MDT) did their assessment he did not qualify for funding as we were told he didn’t need any medical treatment, i.e, injections or anything. They said if he deteriated he might qualify in the future. The only way he could deteriorate is if he stopped breathing as that is all he can do for himself. Is it correct that even if someone needs 24 hour care unless they have a specific medical need they do not qualify?
I can fully identify with this article. When reading the assessment of my mother so many incorrect statements were included it felt picky on my part to challenge everything. The whole report appeared to relate to someone I did not know. The process took so long that my mum passed away two days before the assessment was due. Luckily when I rang the social worker to tell her mum had passed away she said it may still be possible to obtain funding. When the Assessment eventually took place I was informed no social worker need take part. The social worker is named in the Report and when I reported this to her she said I should dispute it, which I have done several times but her name is still there. Staff involved in such assessments are always friendly and “appear” helpful. This I have found to be suspect. It simply makes it harder to dispute their statements.
Like Jackie I can also relate similar experience during Continuing Healthcare (CHC) Decision Support Tool meeting for my wife. I have to challenge the team to change each and every inaccurate statement about the care needs of my wife. Thankfully they have agreed for CHC eligibility. My wife is now in a Nursing Home. I have been told that a Nurse assessor will come alone to do a three months review. She said she will do this with care home manager and then let me know. I would appreciate if somebody who has gone through this review guided me. What should I do? Do I need to be there from the beginning? Please help me.
For my mothers retrospective review, the Decision Support Tool (DST) has been changed twice and despite providing the local panel with rewritten care domains, all evidenced, the local panel still referred to the DST when commenting on the key factors (nature, intensity, complexity etc) in their report. They also wrote that my late mother suffered discomfort despite suffering severe pain of which she was prescribed the strongest painkiller available. It does not matter what the care needs are or how severe, they will find a way of denying funding. They admitted to not obtaining medical records from 2 hosp and not yet admitted to relying on GP notes from the care home instead of obtaining proper notes from my mothers GP practice. How do I know? Because I checked and was told there had been no attempts to obtain these records!!!!
Can I just ask, my father is very aggressive on intervention and physically attacks the carers when I have said at Multidisciplinary Team meetings about his behaviour should be severe they disagree saying the carers should walk away and go back later; how can you leave a 98 year-old man with advanced dementia without care? I am going to try for another Checklist to be done. He has deteriorated so much and lost a vast amount of weight has puréed food has thickened drinks. The GP has taken him of all meds now as he refuses to take them, they did give them covertly but as he stopped eating they were not working any way, his GP told me it’s basically palliative care for him now. He is not mobile has to be hoisted when moved. He does self-fund. Any comments would be most helpful.
My Mum has mixed dementia and has been in Hospital for 3 weeks after collapsing at home. She’s been placed under a Deprivation of Liberty Safeguard (DoLS) and has tried to get out of the ward on a number of occasions. The Discharge Team have stated that they have carried out a Continuing Healthcare (CHC) assessment and she doesn’t qualify for NHS funding. I asked for a copy and they haven’t yet provided me with one. Her condition has worsened since going into Hospital, and we are now at the stage where a care home seems the best option. She has no assets so is not able to self fund. Is it still worth challenging the CHC decision? We want to do what’s best for her, but it’s a minefield and I feel woefully out of my depth.
My wife Mary has Huntington’s Disease and (thanks to reading Angela’s book twice!) was awarded Continuing Healthcare (CHC) last year. The CCG now want to do an annual review and have sent me CHC 24 hour activity sheets to be completed over seven continuous days. The CCG are asking for as much detail as possible about the care given in order to meet my wife’s individual health, social and wellbeing needs, during the week.
The care firm send two carers four times daily and the ladies are kind, gentle and generally do a good job. My concern is that those who attend Mary fall into two groups: (1) British but with a poor level of education as evidenced by the quality of the report sheets they are obliged to complete, and the language they use. (This sounds very subjective but this is how they appear to me, a retired teacher)
(2)The second group, non British, behave in a much more professional manner and are better educated but have difficulty in communicating as they are fairly new to the UK and learning the language.
I am worried that the carers will not be capable of completing these activity sheets properly to the detriment of my wife’s review. Am I right to be worried?
My relative applied for Continuing Healthcare (CHC) but was rejected at the first Multidisciplinary Team assessment. We appealed. By the appeal stage he had worsened and two domains were put at a higher level. Still he was denied despite being unable to do anything for himself eg wash,dress,toilet,eat,communicate. The care home notes said he was “assisted” with eating and dressing. They accepted this was not true as he has to be dressed and fed but said they put it like this for the dignity of the patient! As I argued the patient couldn’t read and it was being fed etc as a result of his condition that was undignified!! I believe the home was complicit in him being denied CHC because they would get less money from the NHS than from his wife having to top up the local authority amount.
Eight days before he died we were told he was not going to die within three months and that his decline had not been rapid enough to qualify for fast track even though he could no longer swallow. The GP phoned two days later and he was fast tracked. He died six days later and received six days of CHC funding.
My son has turned 18. He was receiving Childrens Continuing Care until December 2016 when he had his annual review under the new government criteria and we were told he no longer meets the criteria. We appealed and lost but have managed to keep the service til July. We have a meeting tomorrow with his social worker, children’s continuing care nurse manager and a verifier from the CCG. We have been told the meeting may last 3 hours. The reports are in. My son has about 100 tonic clinic seizures a month, no speech, severe learning wears pads, is doubly incontinent, relies on food, drink and meds through a gastrostomy. Is a meeting to complete the decision making tool usual?
My father has severe dementia and for his own safety is with in a secure area. Would he qualify for Continuing Healthcare, as he is a risk to himself?
Hi, I wonder if you can help. You say the Multidisciplinary Team should usually include both health and social care professionals, who are knowledgeable about the individual’s health and social care needs. What happens if the individual’s conditions are very rare [ one is in the top ten list of rare diseases] How does this work? We already provide the nursing home and GP with info on it.
My mum passed away 29 months ago and I am still fighting her case. It became too much stress, so have paid a firm to deal with it. Please do not believe anything you are told without querying and considering. I was told so many lies it is unbelievable. You need to read everything and consider yourself what is a fair assessment for your relative. If you are not happy then challenge. Keep copies of all forms, letters, documents etc. I found it helpful to pay £50 for my mum’s hospital records for the 9 months she spent mostly in hospital. The hospital notes stated a Best Case Decision may need to be made and confirmed that mum was transported from hospital by ambulance on a stretcher. The nurse assessor stated in her report that my mum walked around the garden of the Care Home. I would never have believed so many lies could be put in a professional report. Sadly in order to win you need to review everything and if not happy dispute it. Do not say something is not worth challenging. If it is not correct then challenge it in order to make your case. Do not let anything slip past unchallenged.
Vanessa – you mentioned for Juliet’s comments to be included before the Multidisciplinary Team meeting? Are you suggesting that we should write to them with what we believe our relative’s needs are, including complexity, intensity, etc ? And any other medical records to add weight to our case. I recently discovered mum admitted to Hospital in 2004 and they kept her in for 3 was even though they wanted to discharge her I believe as they mentioned schizophrenia and knew she lived alone they kept her in longer. Surely this adds to fact she had a problem before she went to care home 3 yrs later. . Hospital aftercare? She didn’t get better mentally and always needed to be kept an eye on by Community Psychiatric Nurse who couldn’t always get access to her