NHS Continuing Healthcare appeals - what to do first
Making sense of NHS Continuing Healthcare appeals
How to appeal against an initial decision by the NHS to refuse NHS Continuing Healthcare funding – how to start the NHS Continuing Healthcare appeals process…
You may have had a Checklist assessment for NHS Continuing Healthcare funding, and you may also have had a full multidisciplinary team assessment (using what’s known as the ‘Decision Support Tool’ or DST). At either stage, you may have been turned down for funding by the local NHS.
This decision can be hugely frustrating, especially when you know that your relative has significant health needs.
If you have been turned down, you can appeal. Make sure first that you’re familiar with the Continuing Healthcare eligibility criteria.
The NHS should have sent you information about the formal appeals process and how to proceed. Here’s what to do next:
- Write to the Manager or Coordinator of the NHS Continuing Healthcare team at the local NHS Clinical Commissioning Group (the local NHS). This is the team that made the decision and/or arranged the assessment(s).
- State that you disagree with the outcome. and why.
- If you’ve been turned down at the Checklist stage, ask for it to be done again
- If you’ve been turned down after the MDT meeting, confirm that you will be appealing. You can also ask for this stage to be repeated if you can show that it wasn’t done properly.
- State that you will be providing arguments and evidence to support your appeal in due course.
- The NHS may reply giving you just a very short time in which to do this. You can, however, remind them of the official timescales for Continuing Healthcare reviews.
- Then you need to start pulling together all the reasons why you disagree with their decision to deny funding and submit a written appeal to the same NHS Continuing Healthcare team.
The NHS should look at your reasoning and act on it, which may include a reassessment.
If you have already had a reassessment and you’ve still been turned down for Continuing Healthcare, you need to appeal through a different process: You now need to ask the NHS England (the NHS National Commissioning Board) for an Independent Review.
Read more about the various stages of the NHS Continuing Healthcare assessment and appeal process.
Watch out for the misinformation you may be given during assessments and appeals.
Read our frequently asked questions on NHS Continuing Healthcare. You’ll find some extra tips on putting together an appeal.
what if we have been turned down after the check list assessment??
I have a review panel meeting soon for a period of assessment that we feel was wrongly turned down for NHS CHC (the CCG downgraded two of the domains that the MDT recommended with no proper reason). Two of the checklists done during this period, in our view, were fabricated. We waited 14 months for copies of them and then we received computer generated, unsigned, uncompleted similar checklists and more importantly were not told at the time of the dates of the assessments so could not attend, and after thoroughly checking the nursing home care records since, found there to be no record of these assessment visits to our Mother on those dates. This would indicate that our Mother was not actually assessed for over 3 years, obviously not following NHS Framework Guidelines! Surely this is criminal fraud by the CCG and my Mother who has subsequently died, has had her assets “stolen” from her. I will not go into details of her healthcare needs here, but suffice to say they definitely met the NHS CHC domain criteria. Would you advise just plodding on with the review or taking the CCG to court for fraud?
I’ve just come back from our mother’s NHS assessment. She has been in a Nursing Home since 2008 Suffering from vascular dementia, and other medical problems similar to those I have read about on this site. like many others she is double incontinent’ helpless and unable to communicate. The nurse doing the assessment was a general nurse, who put our mother’s behavioural problems down to her cognition problems, so the fact that she refuses to eat, won’t have her teeth brushed, nails clipped and cleaned and refuses her medication (now given covertly, so not a problem then!) etc were not considered because she doesn’t mean to be awkward, though to my mind it is passive non-compliance and unintentional self neglect . I would appreciate anyone else’s thoughts on that one – anyway she scored her only ‘no needs’ for behaviour. I have to say that she doesn’t display aggression whilst refusing, she just turns her head away or snatches her hand away sometimes with a scream, but that’s about it for that. Anyway that was her only no need score. The rest of her scores were one severe (cognition), two high scores (communication and mobility), five moderate and two low scores. When we were told that she still only qualified for the NHS Nursing element and not NHS Continuing Care, I explained that I was not signing to say that I agreed with it because the decision was not Coughlan compliant and went into the scores and video’s of Pamela Coughlan. I said that if this recommendation went through, which I’m sure it will, I Would appeal and wanted a copy of the DST and copies of all notes made. I also reminded the Social Worker of the legal limit and told her that if she agreed for the LA to continue to be responsible for our mother then she could be signing up for the Local Authority to break the law. She said that she was only agreeing the scores, nothing else. Anyway, we were told that we have to wait until the week after the Bank Holiday before the panel sits and the decision will be sent to us and then we will be able to appeal. After the meeting the nurse and the social worker stayed behind while we went to see our mother in the dining room and then we took her up to her room. We spent some time with her and I left. My sister stayed as she thought they might come to see our mother – she was right. The nurse walked into mam’s room and started to ask he questions (after being told our mother could not communicate). The nurse said hello, my name is Jeanette, mother repeated Jeanette. She pointed to my sister and said “who is that” our mother just looked at her. she then asked where is your cat (as we told her mam had a fluffy cat that she liked to cuddle). Mam replied cat and looked away. The nurse went down to see the care home nurse and told he that mam definitely did not qualify for Continuing Care so we now wait for the decision letter so that we can appeal! Oh and before the start of the meeting the social worker asked for clarification of how mam was funded as it is not clear from her records. I am now concerned that the nurse and social worker may have altered the scores after we left as my sister said they seemed a bit worried when I started quoting Coughlan and the legal bit about the Local Authority. Is there any advice you can give me regarding this last bit?
My mother’s assessment was done this afternoon and she failed to be awarded CHC in spite of her score being one No needs, 2 Low, 5 Moderate, two High and one severe. I made the nurse and social worker aware that I was not happy with the decision to only award the nursing element of the funding (which she has been receiving since 2008). Our mother is like many elderly people described on this site completely helpless, unable to move or communicate, can’t feed herself etc. I told them that I would appeal on the grounds that my mother’s needs were far greater than those of Pamela Coughlan and that the scores she had received proved that she had a primary health need. The nurse started to describe people in intensive care, stating that our mother’s needs were not complex. I asked the social worker if she was aware of the limits of LA responsibility. She told me that all she was doing was agreeing the scores. The nurse said that we just have to live with the laws in the Pamela Coughlan case until another case is fought and overturns those laws. I said that I thought the precedents set by the Coughlan case were fair but it was the way in which they are being applied that wasn’t right. After the assessment we went to see our mother in the dining room, but the social worker and nurse stayed together for a good while longer. When the social worker left, the nurse went into my mother’s room and introduced herself to our mother. My mother repeated the nurses name. The nurse then pointed at my sister and said “who is that”? My mother just stared at her. The nurse went on to ask mam where her soft toy was – where is the cat? My mother repeated “cat” and looked away. The nurse then went to see the care home nurse and told her that our mother was definitely not recommended for CHC. Is the nurse allowed to change the scores after the meeting?
My sister has spoken to the social worker this morning and her scores are still the same as those we have, though I still think the nurse may change hers (or am I just mistrusting for no reason!). The social worker told my sister that she definitely thinks we should appeal, though she said our mam had needs but those needs were being met. I am thinking of getting our MP involved as I wonder if she can do something from the local authority side before our mother’s case is presented to the panel for confirmation of the decision. I really think the local authority are acting illegally if they accept responsibility. Our mother has no choice but to remain in the nursing home as she has a deprivation of liberty order for her own safety – and she has to pay for the pleasure!
Thank you for your comments Angela. I wrote to our MP and in turn she has written to the Local Authority raising some questions on our behalf. I will let everyone know how we get on. Just something that I can smile about now, is that the assessor put the fact that our mother refused to have her teeth cleaned down to the possibility that she may always have had a phobia about toothbrushes – she said “you know, like someone scratching a blackboard” (?!)
We have a continuing care assessment for my mother in law on Friday. I’m a bit concerned by Elspeth’s comments about the nurse saying her behavioural problems don’t count because it is a cognition issue. Surely that can’t be right in any way? The behaviour section includes severe fluctuations in mental state and that is even listed on the form. Mental state is cognitive surely? What is the best way to deal with this if it come up?
We have had a checklist assessment carried out today on mum, she qualifies for a full assessment which the hospital says they will arrange. I disagree with some of the scores they have given mum. For nutrition they have marked her B and put the comment that she is at high risk of aspiration, surely this should be A as that domain says” …the risk of choking and aspiration to maintain airways”. The reason she is still in hospital is she can no longer weight bear so her care package needs changing, they have marked the mobility section B saying she can assist with transfer, she does not understand any instruction, cannot talk or give consent to anything but is very compliant, she weighs 5 st 9 lb so it is very easy for two nurses to move her around which they say is her co operating.
Can I ask them to change this now or should I wait for them to carry out the full assessment
The checklist was completed for my mother 2 weeks ago, with an A in an asterixed category, and I was told that she would be going through to a full assessment. Now they say that a full assessment will not be happening. How do I fight this?
Further to my last comment – they have now agreed to a full assessment, but only once she has left the rehab unit and is back in her own home. They were very aggressive, and I have asked them to put it in writing.
I am next of kin and together with my Aunt’s POA we are appealing against a CHC assessment and requesting a reassessment. I have been sent a detailed questionnaire and consent form and assume that the only way a reassessment can be undertaken is to complete this questionnaire. My concern having read your book is whether completing the questionnaire could work against us and would rather make the arguments at the reassessment. Is there a requirement to complete the questionnaire to support an appeal and reassessment ?
I have a question about sectioning under the Mental Health Act in the hope you can clarify and thus enable me to end my five and a half year battle to get NHS Continuing Healthcare Funding for my wife.
My wife was placed in the local secure unit hospital under section 2 of the Mental Health Act on April 3rd 2009. She was sent to hospital for a checkup due to low oxygen level (or some such I believe) on the evening of April 30th 2009,and returned to the secure unit after midnight.
She then remained in the secure unit until finally being allowed home on June 9th 2009 — her total confinement being 68 days.
Here is a quote from the Mental Health Act that gives me pause for thought:
Quote
Summary of the detaining sections
The most common sections which you will come across in practice are sections 2, 3, 37, 37/41, and 47/49. These, together with other detaining sections, are summarised briefly below. Information relating to whether or not the “consent to treatment” provisions, and relating to Tribunal eligibility, can be found elsewhere. [DRAFT NOTES]
Section 2: admission for assessment
This is a civil section for assessment (or for assessment followed by treatment). Two doctors must make the recommendation, and the application is then made by an AMHP. It lasts for a maximum of 28 days and cannot be extended. At any time during the s2, the patient can be put on s3; otherwise, detention expires at midnight on the 28th day. [To add: criteria]
Unquote.
I interpret this to meaning that my wife should have been allowed home after 28 days, and because the section 2 cannot be renewed, or extended, she should have been placed on a section 3. That would have entitled her to automatic full NHS care funding. Incidentally, she lacked the cognitive ability to become a voluntary patient.
This all happened before the government changed in 2010 and began moving all the goal posts.
I only discovered the 28 day section 2 limitation recently and believe my wife was wrongly treated in 2009, and the past five and a half years of my fight for justice could be vindicated if an error was made.
Thank you and regards,
John Hamshare.
My mother has been given Funded Nursing Care but was turned down for CHC following the Multidisciplinary Team (MDT) meeting. Going through the Decision Support Tool I’m wondering if I have grounds to appeal. My mother has a number of health issues, Type 1 diabetes (for 65 years), stage 4 kidney failure, registered blind (but partially sighted) and having 2 heart attacks and suffers from angina. However the main issue is really her diabetes. The decision support tool (of which I haven’t received a copy) section on drug therapies she was classified as ‘High’ and the letter confirming the decision said her need was not of, “any complexity, intensity or unpredictability”. However since going into a nursing home on 17th May 2016 she has been readmitted to hospital on 4 occasions for high blood sugar and high ketones. As of today she has managed 25 days in the home and 27 in hospital. This seems to indicate complexity and unpredictability to me.
The letter said she would be reviewed within 3 months and that I had 6 months in which to appeal. Have I got a case already or should I wait and see if she is admitted to hospital even more times (which I suspect) and wait for the 3 month review?
This site is a great resource – thanks.
I’m in the process of appealing my Dad’s MDT assessment and I’m wondering whether to hold anything back at this stage, pending the actual reassessment. Here’s what I’m thinking of saying in my appeal letter:
I wish to appeal my father’s CHC assessment on the grounds that the team failed both to consider and to comply with the findings of the Coughlan judgement as required by the NHS National Framework and the law.
At the start of the assessment meeting I asked the team how they would ensure compliance with the Coughlan judgement. The NHS representative replied that the Coughlan case was old and that there have been other cases since then that have changed the situation, implying that Coughlan was no longer relevant. I said that the Coughlan judgement clarifies the 1946 National Health Service Act (which became law on 5th July 1948) and that as far as I was aware that law had not been superseded. At this point the senior social worker said that they were now guided by the 2014 Care Act; the implication being that it abrogated earlier legislation. At the time I was not sufficiently familiar with the 2014 Care Act to challenge the point.
Since then my detailed investigations have upheld my conviction that the Coughlan judgment is just as relevant now as ever it has been and that the 2014 Care Act has no bearing on the responsibilities of the NHS as set out in the NHS Act. So the statements made by both senior members of the multi-disciplinary team were misleading, disingenuous, or negligent.
The fact that the team chose not to include this portion of our discussion in the assessment notes strengthens my impression that compliance with the law was not a feature of the team’s agenda.
I can entertain only two possible conclusions: either, there was a deliberate intention to deceive, in which case the assessment was prejudiced; or else, the team sincerely believed that what they were saying was true, and therefore lacked the knowledge necessary to ensure compliance with the Framework and the law. In either case I consider the team negligent and the assessment was thereby impaired.
In the cases brought before them the courts have consistently pointed out the flaws in the NHS approach of equating “need” with “care”. Need is not diminished by the nature of the treatment nor the relative qualifications of those administering it. Lord Woolf made this very point in his summing up in the Coughlan appeal when he said, “It’s all nursing – caring for the sick”.
Local authorities can only legally accept responsibility for care where that care is ‘incidental and ancillary to the provision of accommodation’. Prior to getting Alzheimer’s disease my father had been a strong, intelligent and capable man, living in, and managing, his own home. His need for care came as a direct consequence of his illness. His declining mental capacity and tendency to violent outbursts made him a danger to himself and those around him. It follows that his health need is neither ‘incidental’ nor ‘ancillary’. His primary need is a health need, not one of accommodation.
When father was admitted to the care home four years ago the family was told that he would have to pay his own fees. We were not apprised of the existence of CHC and no assessment was carried out. This may have been oversight on the part of the care home or the local authority, but I understand that primary responsibility rests with the CCG.
Under the NHS Act, every resident British citizen having an illness, disability or injury is entitled to receive NHS care ‘free at the point of need’. This is a ‘right’ accorded to everyone by law. The NHS cannot legally disown this responsibility, nor can it apply selective criteria that are not included in the Act or upheld by case law. Even to comply with its own framework it should be able to demonstrate that my father’s needs are less than those of Ms Coughlan and from the results of his DST this would not appear to be the case.
I have an appeal scheduled for October and I wanted to bring my daughter who’s healthcare I am appealing, along to the panel meeting. I have been sent a letterform the CCG saying ‘it is not advised for Lizzie to attend as the facilities at the CCG are not suitable for people with disabilities. Should she need any care during her visit her we would be unable to meet her needs’
I am astonished that this is the case. I am thinking this is discrimination on their part. My daughter has CP and up until now has been fully healthcare funded. Her condition has not improved or any need been reduced or permanently removed. We have to go about our daily business and there are lots of places we visit that are not totally equipped to meet her needs but we manage. It is my instinct that they do not want the panel to meet her. Is it normal for the person if they are able to attend a review panel? Has anyone else had similar experiences ? Janis
Thank you; I am in the process of penning a response to them and your comments Steve are particularly helpful. It’s a very stressful time and not made any easier when you have a CCG that are as deliberately obstructive as this.
I have a pending Continuing Healthcare (CHC) appeal with in the next 2 weeks. The person who was meant to be accompanying me, a senior member of staff from my daughter’s care home, is unable to attend on the appointed date. I contacted the appeals department in the hope that I could re arrange the appeal. I spoke to the a lady panel member who stated in no uncertain terms that the appeal would not be re scheduled and that I was not allowed to take a person as a witness from my daughter’s care home, as this would represent a conflict of interest due to the staff member receiving payment for her time. The lady further stated the appeals process was not to gather further evidence or for people to be cross examined but merely an opportunity to allow me to have my say and for the panel to make their decision. I did not want to get into a confrontation with this lady as I was worried this would prejudice my future dealings so I didn’t challenge further. I am not convinced and feel very anxious. Any advice please?
I take the view that you are entitled to make any representations you choose in support of your case. I don’t see why you can’t have somebody else present as a witness. However, if the staff member is unable to attend perhaps you could get a signed statement from them listing the points that you consider important to your case. Written evidence can be more difficult to challenge and is automatically part of the record. I intend to have someone taking written minutes when my dad’s appeal is heard. The main thing is to be confident in your grounds for appeal, stick to those points and reiterate them as often as necessary to ensure they are acknowledged.
Firstly, your website has been of huge support and a wealth of information; thank you! My father has just been turned down for CHC funding. On the DST he scored 1 severe, 3 high, 5 moderate and 4 low (he has needs in all areas). As a result of a severe brain haemorrhage, he has severe cognitive impairment, cannot communicate, cannot swallow and is doubly incontinent.
At the MDT there were only 2 people, the discharge nurse and the lady from the CCG (who had a nursing background). The social worker did not attend and prior to the decision we had no contact with the SW at all. Is this grounds for an appeal?
Furthermore, at the MDT meeting we were told that we were only allowed to submit evidence that was 4 weeks old. I am sure I read somewhere that evidence can date back to 3 months. Am I correct in this? Again, is this grounds for an appeal?
Finally, my father has a severe allergy to bee stings and requires an epipen. In my opinion this makes him a ‘higher risk’ patient, because he cannot communicate his needs at all and thus more vigilance would be required. I feel the best fit category in this situation (including the fact he requires other medication via a PEG) takes him into the ‘high’ category. However the nurses at meeting refused to accept this. Can I pursue this line as well?
Many thanks
The absence of a social worker means that the local authority was not party to the decision making process and yet the NHS can only reject funding if the local authority is legally permitted to accept responsibility. So how can a decision be made in their absence?
I would appeal on the grounds that the MDT was not properly represented and that the NHS was therefore negligent in allowing the DST to proceed and in making a potentially unlawful decision without social services representation. Furthermore the decision was not Coughlan compliant as required by the National Framework and the law since your father’s needs clearly exceed those of Miss Coughlan.
It’s worth looking at the ADASS [Association of Directors of Adult Social Services] recommendations to social workers:
“The correct use of the DST is essential to ensuring a consistent approach to assessing eligibility. However inconsistency may continue if LAs or PCTs adopt different views on the combination of high/moderate (etc.) needs that would normally indicate a PHN [Primary Health Need]. As one guideline it is suggested that anyone found to have the following combination of needs:
• two or more high needs (or need above high), AND at the same time
• three or more moderate needs (or needs above moderate)
should normally be considered to be beyond the scope of LA provision
(see para. 5 h) below).”
On the basis of that guideline your father would be beyond the scope of LA provision and hence has a primary health need that is the responsibility of the NHS.
As far as evidence goes I’m not aware of any time limitations. I would consider that anything that is pertinent to the case can and should be presented. I submitted evidence from 4 years ago at my father’s DST.
At a recent best interest meeting I asked the head of social workers at the Hospital if they complete a Local Authority (LA) Limits test to ensure the LA is not breaking the law by taking responsibility for my Aunt’s care. She said she had never heard of it. I also emailed the county council social services and requested a copy but was told they work closely with NHS and was given info on Continuing Healthcare (CHC).
It would appear that LA are routinely breaking the law by assuming responsibility for care when no CHC Checklist has been done and when a Decision Support Tool is completed and the majority of the time ‘fails’ the LA accepts responsibility by default.
Can anyone provide a copy of the LA limits test or explain to me how I can evidence the LA are breaking the law apart from showing the Coughlan test case. Every time I mention Pamela Coughlan I’m either ignored or dismissed.
Many thanks.
I have finally received a date for the appeal for Continuing Healthcare (CHC) funding. I have not been asked for any written evidence and in fact have been told that I do not submit anything. I just turn up to the meeting. Surely this can’t be right.
Hi, my daughter has recieved confirmation of a primary health need on Dec 8 2016. She has severe learning disabilities and autism plus an un-diagnosed sensory need. Prior to recieving confirmation there were 4 failed assessments due to failings of assessors which Continuing Healthcare apologised for. During the Decision Support Tool (DST) meeting the co-ordinator and lead assessor was rude, dissuasive, and dismissive of information offered to assist in the meeting. The outcome was that she did have a primary health need at severe level though the co-ordinator, lead assessor did everything possible to reduce domain levels presented by nurse, social worker, professional consultant, family. We requested copy of DST before presentation to commissioners as the DST could not be fully completed on that day. This was not done. Finally got copy of DST 6 weeks ago only to find domains had been altered and reduced by co-ordinator assessor. This was confirmed by others in meeting. Diagnosis was also incorrect and also incorrect statements added. This is a legal document that effects lots of aspects of my daughter’s life , example being: care plan, behavioral assessments, reviews. How do I get this corrected and why would somebody do this, surely not to reduce financial implications. Why?
Please would you tell me if it is legal for an appeal to be carried out just by the NHS or does Social Services need to be involved too?
Hi
I have an aunt who is currently in a nursing home she is 96yrs of age, the care she receives is excellent, and my uncle who is 95yrs visits her daily. My aunt is frail and requires help in all aspects of daily living, and has dementia. During a very recent re assessment it was voiced that she may have to move to another care facility as her care needs were being downgraded. The outcome is yet to be decided upon, but has caused a lot of distress for my uncle who himself is frail, and would be catastrophic for my aunts well being. Have you any advice in circumstances such as this. My aunt’s nursing needs haven’t changed during this placement and we are finding difficulty why this is happening, except for a funding issue.
Mum who has Alzheimer’s Dementia was granted NHS Continuing Healthcare (CHC) funding in August 2015 primarily because of her falls risk and tendency to be aggressive. The falls risk has largely gone (managed need) because she is in a wheelchair and she is generally compliant with care although she did hit a carer last week. At the annual review in January this year the assessor decided that we should go to a full assessment – I had expected that because many have lost their funding in this part of Essex. I fully prepared our case but had been warned what was likely to happen – social worker said eligible, CCG assessor said ineligible. So it goes to CCG management who you would expect to agree that mum is ineligible. Mum is at a very advanced stage with typical needs such as dysphagia / fragile skin / double incontinence / eye problems / mouth sores / anxiety – withdrawal and she is now very sleepy, eating badly and losing weight. Nothing dramatic – really just typical late stage symptoms. I argued every domain from the standpoint of nature-intensity-complexity-unpredictability but you could tell the CCG assessor had her mind made up. My strongest argument is that mum’s diagnosis / symptoms / needs are essentially the same as when she was assessed last year but with the needs becoming more intense. If she was eligible last year how can she be ineligible this year ? (Ok I know the answer – they have changed their interpretation of the domains so as to withdraw funding !). The CCG assessor also made the point (as they always do) that there was a lack of evidence – I responded that the evidence was the same as last year. She had no reply. I guess a lot of folks are going through this. I will appeal through all levels but can guess the end result!. All very sad.
Does anyone know please of any legislation or guidelines with regards to the Local Appeal Panel where they have to supply you with copies of the notes & reports that would be viewed in the meeting & used in their decision? We are unable to get to the meeting (For various personal circumstances) & we were told we would receive copies of all notes being passed to panel members. We have found out that GP & Nursing home notes will be used, but have now been told that we can’t have copies – we can look at them if we attend the meeting, but they won’t send us copies. As my relative has just died, we now have to go through a long extended process of obtaining copies. Is there any legislation that would mean we could insist on the copies that are being presented to the members of the panel. Thank you
Trying to get CHC Assessment for my MiL with Alzheimers – first checklist 4 “B”s with behaviour as C despite numerous attacks on staff/residents. Asked for review, now 1 A, 5B so you would think that full DST assessment would follow but no, checklist check form has added a paragraph about non compliance to medication (on going for >2 years) means that unlikely to be at therapeutic level and care home should try covert medication (already tried !)
– (and Drug Therapy was scored at B for non compliance in the first checklist). CHC CCG told me decision was final and referred me to Beacon. Have raised complaint with CCG Complaint manager (first response was that LPOA Financial not sufficient – have to consider if in MiL best interest to raise complaint !)
Anyone have any similar experience with medication non-compliance ruling out/delaying DST ?
Also if care home have to resort to covert medication would this push medication up from B to A ?
Thanks for a great website