Typical mistakes in NHS Continuing Healthcare assessments

Typical mistakes in NHS Continuing Healthcare assessments

Typical mistakes in NHS Continuing Healthcare assessmentsThere are many myths and misconceptions about NHS Continuing Healthcare, and many families find the process confusing because of the misinformation they’ve been given.

Here are some tips to help with some of the questions families ask most – addressing some of the typical mistakes in NHS Continuing Healthcare assessments:

  • No one can say whether a person will or won’t be eligible for Continuing Healthcare funding until the assessment process has been carried out and a full picture of need has been established – including risk.
  • Many people are told that to qualify for NHS Continuing Healthcare you have to have a PEG feeding tube. Or you have to be at the end of life. Or be completely immobile. Or be unable to swallow. Or be in a coma… or have some other specific problem. None of these are true. They may contribute to the full picture of need, but don’t be put off if your relative doesn’t display these specific things. Eligibility is about the whole picture of care needs and risks – and it’s not about any specific diagnosis or any one specific problem.
  • The qualifications of the person delivering the care are irrelevant. This is a vital point. What matters are the nature of the care needs, not who delivers the care. It can be a husband or a wife, a carer or someone else – it does not have to be a nurse.
  • You do not have to be in a nursing home to qualify for NHS Continuing Healthcare. You can be in any kind of care home, or you can be in your own home, or somewhere else. The care setting (i.e. where the care is delivered) is irrelevant.
  • There are two main stages of the Continuing Healthcare assessment process: 1) The Checklist; and 2) A full assessment by a multidisciplinary team (MDT) where a Decision Support Tool (form) is completed with input and evidence from all relevant health and social care professionals, and with input and involvement from the family. Note: The Checklist does not determine eligibility; instead, it is a screening process and determines whether you go through to stage 2, the full assessment.
  • A separate Fast Track process is available for people in a period of rapid deterioration or at end of life. It’s important to remember that a period of rapid deterioration does not necessarily have to be at the end of life stage. Many people are wrongly told that the Fast Track is for end of life care only. This is not true.
  • One of the most important factors in determining whether a person is eligible for NHS Continuing Healthcare (and this is often ignored) is whether their care needs are beyond those for which a local authority can legally take responsibility. This was reinforced in the Coughlan case at the Court of Appeal. If the care needs are beyond the scope of a local authority, they are by default the responsibility of the NHS to fund. This is why it’s vital that a social worker or other representative from the local authority attends a full assessment MDT meeting. If a person is found not eligible for NHS Continuing Healthcare and yet their needs are indeed beyond the local authority’s remit, the local authority will be acting illegally in taking responsibility/means testing.

Read more about typical mistakes in NHS Continuing Healthcare assessments

29 Comments

  1. Kate 3 days ago

    My father has advanced Alzheimer’s, mid stage heart failure, is on meds for blood clots which causes bouts of serious bleeding, is bed bound, catheterised, incontinent, requires help and prompting with everything, is at risk of aspiration and takes in the region of 1hr 30 mins to eat a meal. He also suffers with recurrent UTI’s and chest infections, and, at his last hospital stay, contracted Giardia! Yesterday we had our DST meeting with the CHC nurse and social care rep. Myself and my mother had prepared, I thought, well for this meeting with regards to research, note making, supporting evidence etc, but it was all a wasted effort as we were not listened too. The CHC nurse had clearly made up her mind before she had even walked through our door, which my mother and I realised after 5 minutes of her being there. She talked over us, did not look at documents we had pulled together saying she already knew everything and that she was the professional here in this situation. She was terribly patronising and belittling to us, even though as his careers for the last 4 years we know every minute detail of my fathers current health situation. It was a very upsetting and frustrating meeting. The CHC nurse told us that we had no opportunity to feed our thoughts into the 4 characteristics (intensity, nature, unpredictability, complexity), she merely paid lip service to us feeding our thoughts into his needs level for the 12 Domains. Is this right? Should we have been given the opportunity to feed our knowledge/evidence into the characteristics? We were told emphatically this was not a part of the process for us to be involved in but was only for her (the CHC nurse) and social care rep to debate and argue about privately!

    • Care to be Different 2 days ago

      Hi Kate – this is nonsense but sadly typical of the way in which people who go through this process are treated. Of course you are entitled to have your say. Do get in touch if you would like to chat it through with one of our experts. Kind regards 0161 979 0430.

  2. LMCF 7 months ago

    We have had an assessment and dst 5 high 4 moderate 1 low chc team have now defered the decision and not told us why. Phoned but just keep getting pasted from piler to post. 6 months since initial assrssment. Way past the 28 days as stated in the guidelines. Any idea how I can move this forward.

    • Care to be Different 7 months ago

      Keep chasing! If the outcome is not as you expect do get in touch with us and we will see whether we can assist you with it. Kind regards

  3. karin tolson 2 years ago

    Make sure you keep notes if you look after somebody at home, my husband had two cares four times a day, I had not kept notes and therefore there was no evidence of all I did during the day or night. At night, changing pads, this needs two cares, I did the best I could on my own, convenes often came off I did not want my husband to spend the night in a soiled pad or a soaking wet bed, I am proud to report that in nearly two years, immobile in bed, he had no bed sores. No carer was available from 20.30 to 7.00 in the morning. No evidence of how often I got up in the night. MAKE SURE YOU KEEP NOTES It took nearly three years to win my case.

  4. Maria 3 years ago

    Hi, my mum is in a care home with the later stages of vascular dementia, we went through the process of Continuing Healthcare six months ago but surprise surprise was refused. She needs 24 hr care, can’t do anything for herself, would not eat or drink if she wasn’t fed, and is doubly incontinent, and is virtually bedbound. Could we go down the route of a re-assessment and how would we do this..? Thanks.

    • Angela Sherman 3 years ago

      Maria – when you received the decision denying funding, you should also have received information about the appeal process. You have six months in which to appeal – however, if you were not told that then insist that the Continuing Healthcare team look again at the previous assessment. Your mum should ALSO be reassessed at least every year – and sooner if her care needs increase. You ca contact the Continuing Healthcare team directly and/or get the care home to refer her for reassessment. This may also help: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/

  5. Jennifer thompson 3 years ago

    My mother had a stroke 16 months ago and I have been taking care of her in my home ever since. I have now decided that a care home is the best for all I am just so tired and can not put mum’s needs before my own and my kids anymore. She has what I call high needs. She is PEG fed and can not have anything by mouth so all Meds and fluids have to be monitored to keep her hydrated. She has no mobility and needs help to wash and dress. She has no speech so communication needs are high I have found a lovely nursing home and then been told from social services that mum has not had a nursing assessment and they will not fund her place and that they don’t think she will screen in for Continuing Healthcare funding. I find this outrageous as my mum clearly has nursing needs after contacting lots of residential homes and being told they will not take a PEG feed.

  6. Stacey 4 years ago

    My nanna has paranoid schizophrenia and has been in a home for 10years. Just a few months ago a letter dropped on our doorstep saying an assessment had been carried out and that she now had to pay for her care. We knew nothing about the assessment and when phoning up the CCG we were told my nanna had requested that none of her family be at the assessment and that the only person to get a copy of it be her (which never got sent to her according to the care home). My grandad has court of protection over all of her financial affairs and never got invited to the assessment either – we were told this was okay because my nanna was assessed as being completely capable of making her own decisions even though she has paranoid schizophrenia! Now they are saying she has to pay for her care, leaving her with £90 a month and still we are not allowed to see the assessment, know when it was carried out, who did it etc. We receive a letter inviting us to every other meeting at the home, except this one. Every organisation we have contacted has passed blame or refuses to give us any information at all. Any help would be appreciated. Many thanks.

    • Angela Sherman 4 years ago

      Hi Stacey – the actions of the NHS are so flawed here. No one can simply write to you saying your nanna is no longer eligible. There must be a proper review, consent must be obtained and your nanna’s representative (power of attorney, next of kin, son/daughter?) – if relevant – should be informed about and involved in that review. Whoever ‘assessed’ your nanna as being capable of making her own decisions should be able to provide the relevant paperwork for the Mental Capacity Assessment that took place. I doubt it did take place though. If they can’t produce this paperwork, it hasn’t been done properly and any attempt to remove funding could be seen as an attempt to illegally remove her personal assets and wrongly force her to pay for care. Also, if they’re saying she gave consent and is capable of making her own decisions, why has the NHS sent the letter to you? It sounds like serious maladministration. This may help: http://caretobedifferent.co.uk/mental-capacity-assessments/http://caretobedifferent.co.uk/mental-capacity-assessments/

  7. Chris-G 4 years ago

    More on my last post:-
    http://www.bradford.nhs.uk/wp-content/uploads/2011/09/LA-CHC-training-presentation.pdf

    “If no Primary Health Need is evident is the person eligible for FNC, ie.
    needs that require access to a RN over a 24 hour period.”

    That is so untrue because my mum was CHC funded whilst being cared for at home. It is also stated within the Framework that anyone can (and often do) provide nursing care.

    “* If, after joint discussion, agreement cannot be reached each assessor
    needs to sign the DST and request the case goes to the integrated
    health and social care Verification Group (VG).
    * On the rare occasion where the outcome is not agreed at VG the case
    will progress to the joint local process for resolving interagency disputes.
    * Such procedures are conducted with the best interests of the individual
    in mind and have clear timescales to avoid protracted periods of
    uncertainty.”
    This of course rides roughshod over the Framework which states:-

    “35.3 If practitioners are unable to reach agreement, the higher level should be accepted and a note outlining the position included within the recommendation on eligibility. As part of CCGs’ governance responsibilities, they should monitor occurrences of this issue.
    Where regular patterns are identified involving individual teams or practitioners this should be discussed with them and where necessary their organisations to address any practice issues.”

    This does not permit anyone else to resolve matters. Only to monitor and try to prevent future difficulties arising. After all the Framework also informs that no one is allowed to alter the outcome of the assessment without recording the circumstances and even then the evidence within a DST cannot be altered from the higher domain scores that the Framework requires to be recorded.

  8. Chris-G 4 years ago

    If this is typical of the training given then I am not at all surprised that so many assessment errors are made.
    http://www.bradford.nhs.uk/wp-content/uploads/2011/09/LA-CHC-training-presentation.pdf

    Comments such as: –
    Eligibility for FNC payment is identified by the Continuing Healthcare
    Nursing Team
    FNC eligibility is a clinical decision based on information provided within
    the Nursing Needs Assessment
    A social care assessment is not required to obtain FNC payments

    – Don’t help much in training when of course FNC is only to be awarded once a CCG has refused CHC funding that will also have required a social care assessment to justify their acceptance or refusal of the NHS’s final decision.
    There is much similar nonsense within this document.

  9. Kantilal Patel 4 years ago

    My 70 year old sister diagnosed with vascular dementia in 2010. We had to admit her to a residential care home in Nov 2014 as a self funding. We were naive at the time as we did not know about NHS CHC. We applied for NHS CHC funding in January 2015. We had Check List and Decision Support Meetings with the following care levels and funding denied.
    Behaviour: MDT scored Moderate. Care Home manager scored HIGH. Family Scored SEVERE
    Cognition: SEVERE
    Psychological Needs: MDT scored Moderate – On anti-depressant and anti-psychotic Haloperidol to reduce agitation. Family scored HIGH.
    Communication: HIGH.
    Mobility: Moderate.
    Continence: Moderate.
    Skin: LOW.
    Breathing: No Need.
    Drugs Therapy – MDT LOW. Prescribed anti-psychotic Haloperidol. We rate HIGH because needs monitoring before and after administering anti-psychotic Haloperidol.
    Altered State of Consciousness: No Need.
    Other Significant Need: Sleep pattern. – Does not sleep for up to 8 nights in a row but MDT would not accept this as a separate domain or a being a health issue

    We disagree with MDT scoring for:
    Behaviour,
    Psychological Needs,
    Drugs Therapy.
    Disturbed Sleep / Deprivation of Sleep

    Does anyone have any experience / knowledge with for Drugs Domain ratings where dementia sufferers are prescribed anti-psychotics such as Haloperidol?
    Score of LOW seems very ridiculous. My sister also takes other medication for high blood pressure and Cholesterol, anti-depressant, Asprin and anti acids.

    Any knowledge about loss / deprivation of sleep domain.

    We are waiting for Independent Review.

  10. tony 4 years ago

    My father has dementia and behavioural problems which can lead to violence. We had serious problems getting support and suitable care home which also resulted in us putting him in a care home in another town. We had the Checklist assessment completed whilst in hospital and we had to fight to get the Decision Support Tool (DST) completed as the social and Continuing Healthcare (CHC) team wanted him in care before they completed the DST. We insisted on the DST being completed, as this denotes the type and level of care, and eventually the DST was done; this outlined the need for our father to receive CHC as the DST identified his condition and needs (EMI, nursing and behavioural problems resulting in the use of antipsychotic drugs).
    Could you confirm for me that because of his needs, that being (EMI, nursing and behavioural problems resulting in the use of antipsychotic drugs) he is beyond those for which a local authority can legally take responsibility and that he is entitled to CHC. The reason for asking is I know that the CHC will be completing another assessment shortly and I do feel they will try to reduce his assessment so he does not qualify for CHC.
    Regards, Anthony

    • Angela Sherman 4 years ago

      Thanks for your comment, Anthony, and well done for standing your ground and securing CHC funding for your father. I can’t say whether your father would or wouldn’t continue to qualify based on these outline needs; it would require an in depth look at all of his day-to-day care needs. However, if at the time of the next review his care needs are still the same – or greater – the NHS has no basis upon which to remove the funding. It is only if your father’s needs have permanently reduced or the underlying needs have disappeared completely that the removal of funding should even be discussed. See the National Framework page 21 paragraph 56: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf

  11. Angela Sherman 4 years ago

    Additional earlier comments:

    Allan McNicol – 18/03/2015
    My mother-in-law, 86, who suffers schizophrenia, has been in 2 care homes, full time, for several years and has been paying all that time.
    We were unaware that the NHS might pay until we recently received a phone call “out of the blue” from her social worker who spoke in vague terms about how costs might be covered under a “health” banner
    The net result is that it has been agreed that a refund for the period back until August 2014 will be issued and that there should be no further payments made.
    We are trying to clarify the current situation as to why backdating will only apply until last August?

    Angela – 30/03/2015
    In reply to Allan McNicol: Without knowing all the details of your case, Allan, it’s difficult to say for sure, but you may find some useful information – and points to argue with the NHS – by scrolling half way down this page and reading the Q&As about retrospective claims: http://caretobedifferent.co.uk/nhs-continuing-healthcare-faqs/

    Sheila – 30/03/2015
    My mother has been refused continuing health care she doesn’t qualify even though she can’t do anything at all for herself so where do I go next she is still self funding!!!
    What do you have to do to receive this funding?

    Angela – 30/03/2015
    In reply to Sheila: That’s a question many families are wrestling with, Sheila. For info on appeals, take a look at this page: http://caretobedifferent.co.uk/what-are-the-different-stages-of-nhs-continuing-care-assessment-and-appeal/

  12. Elspethblack 4 years ago

    Is there anything that can be done if you think there has been malpractice at the assessment? I am going over what happened at my mother’s assessment today. I felt that her scores came out about right apart from behaviours which the nurse wouldn’t take into account because she said our mother’s refusal to do things like have her teeth cleaned and take her medication were not behaviour problems but were caused by her cognition. I have already posted her scores which were 1 severe, 2 highs, 5 moderate, 2 low and the one no need for behaviour. However at the summing up of the assessment, I made it clear that I was not happy that CHC had not been awarded and pointed out the scores we had agreed for our mother. I know I don’t have proof right now, but I have a real feeling that the nurse will downgrade one (or more) of her scores to fit her decision before it goes to the panel which I understand will be on 3 June. The nurse said her recommendation would be to award the nursing element, which is an all too familiar joke. in addition to these scores our mother has a Deprivation of Liberty order and a Do Not Rescuscitate in place because she is helpless. The nurse did go in to see our mother when she thought we had left, but my sister was still there. She asked our mother some questions which my mother vaguely responded to, but I am sure she will use this to downgrade a score or two. Any advice on this would be appreciated.

    • Angela Sherman 4 years ago

      I can empathise with your thoughts and feeling, Elspeth. Be sure to complain about everything that doesn’t comply with the guidelines. If the scores are changed in secret, that’s very good reason for complaint and appeal.

  13. Lorraine Phillips 4 years ago

    My husband had a stroke two years ago and has to have help with everything.He is paralyzed down his left side he can’t move his arm or leg He has to be transferred manually from chair to toilet bed etc..He has been refused C.H.C twice due to check list he didn’t have enough A’s and B’s’ My argument is he has a primary health need not a social need. He relies on carers and myself for everything. He was in a nursing home for 12 months and got the top up nursing allowance of £109 and we paid the rest of his care. I wasn’t told about C.H.C until late on in his rehabilitation.I am due to be assessed financially on 10th April 2015. I don’t feel we should be paying for his care but not sure how to approach this assessment. We have some assets and our house that we live in. I have paid everything until 26th December when he was admitted to hospital with pneumonia . Since then we have been with Star Team then Social Services as they couldn’t come to assess until 10th April I have been told I wont have to back pay. What else can I do now to get C.H.C?

    • Angela Sherman 4 years ago

      If you believe the outcome of the Checklist is wrong, you can ask for a full assessment to take place. Also, your own money should be kept out of any means testing; it’s only your husband’s money and his share of any joint accounts or assets that can be considered in means testing.

  14. Christine French 4 years ago

    My mother was assessed for CHC on the 16th December 2014 and the MDT recommendation was that she was eligible for full CHC funding. The panel asked the MDT to reconvene and produce more evidence. Although the MDT did reconvene apparently no further evidence was submitted but they maintained the eligible recommendation. Sadly my mother passed away on 24th January 2015. On the 2nd March 2015 we received the funding decision stating that the evidence did not support the assessed levels in 3 of the domains and therefor they found her not eligible. I would appreciate any advice on this.

  15. Sheila 4 years ago

    My mother has been refused continuing health care she doesn’t qualify even though she can’t do anything at all for herself so where do I go next she is still self funding!!!
    What do you have to do to receive this funding??

  16. Allan McNicol 5 years ago

    My mother-in-law, 86, who suffers schizophrenia, has been in 2 care homes, full time, for several years and has been paying all that time.
    We were unaware that the NHS might pay until we recently received a phone call “out of the blue” from her social worker who spoke in vague terms about how costs might be covered under a “health” banner
    The net result is that it has been agreed that a refund for the period back until August 2014 will be issued and that there should be no further payments made.
    We are trying to clarify the current situation as to why backdating will only apply until last August?

    • Angela 4 years ago

      Without knowing all the details of your case, Allan, it’s difficult to say for sure, but you may find some useful information – and points to argue with the NHS – by scrolling half way down this page and reading the Q&As about retrospective claims: http://caretobedifferent.co.uk/nhs-continuing-healthcare-faqs/

Leave a reply

Your email address will not be published. Required fields are marked *

*

2100 characters max. All comments are moderated in line with our Acceptable Use Policy and our Terms of Website Use.