1st October 2018 saw the introduction of the revised NHS National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care. The Framework was published in March this year and its final implementation has been long awaited.
The revised NHS National Framework replaces its 2012 predecessor, but has it been worth the wait?
What is in the new Framework that is going to help you with your relative’s assessment for eligibility for NHS Continuing Healthcare funding?
Unfortunately, there has been criticism of the new Framework in that not much has really changed and it doesn’t go far enough. That is good and bad. Good, in that the core principles and essence of the Framework remains intact which promotes familiarity; but bad, in that certain areas could be clearer with better examples provided in some grey areas that are open to subjective interpretation and hence argument – which invariably means further delays in getting robust assessments and fair decisions.
The format of the revised NHS National Framework is better and easier to follow, and helpfully there is some clearer explanation of some of the more ‘controversial’ issues (i.e. misunderstood by both NHS assessors/practitioners and claimants alike) – such as help with advocacy, unlawful top-up fees, best interests and the ‘well-managed’ needs principle. But, even so, we still feel that these particular topics could have been dealt with better and simplified with clear examples, to help the all parties in this arena understand the issues and remove any doubt.
Make sure you get an interim care package…
One key area of note is in relation to Checklist assessments. The NHS are no longer obliged to do a Checklist assessment in certain circumstances, when for example:
- It is clear to the professionals involved that one isn’t needed at this point in time;
- The CCG agrees that the individual should be referred directly to a full assessment for eligibility for NHS Continuing Healthcare funding (at a Multi-Disciplinary Meeting);
- The Individual has a rapidly deteriorating condition and may be entering a terminal phase that should be referred to a Fast Track Pathway assessment instead;
- The individual is receiving services under Section 117 of the Mental Health Act which are meeting all of their assessed needs;
- The individual has short-term health care needs which are expected to improve significantly with short-term rehabilitation and it is reasonable to allow time to see how they recover.
Another major key issue worth highlighting, is that the NHS no longer have to carry out a ‘Checklist assessment’ in the hospital setting, and in the majority of cases it is stated that is it preferable this assessment should be deferred and dealt with after discharge from hospital ie when the individual returns to their own pre-hospital admission environment (eg back in their own home or back at the care home etc). This is because it is considered that the acute hospital setting “might not accurately reflect an individual’s longer-term needs”. That makes good sense, as a hospital setting may give a false picture of what the daily care needs are and what support is going to be needed; plus of course there may be the potential for the individual’s condition to improve once they are out of hospital. However, whilst that is all perfectly well and good, more cynically, one could think that the underlying raison d’etre is to free up hospital beds and remove ‘bed blocking’, whilst waiting for the Checklist assessment to be done in hospital. Under the 2012 National Framework, it used to be the case that remaining in hospital was your best negotiating leverage to get the assessment done before discharge.
However, as a compromise, the advantage for your relative now, is that under the revised National Framework (2018), the NHS now have to put an interim package of care in place upon discharge from hospital until the Checklist assessment is undertaken. So, ensure that that is the case before your relative is discharged! There should be no gap in healthcare.
The point is that it is now in the NHS’s interest (and yours) therefore that the Checklist assessment is carried out as soon as possible once the individual is back in their own pre-hospital admission setting. The assessment process should in theory move quicker down the pipeline and a decision as to eligibility should equally therefore be made sooner. But in the meantime, the NHS should be paying for all healthcare needs.
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I am just beginning. My husband has Vascular Dementia and terminal MDS Blood Cancer. He is in hospital unable to walk or talk or even eat normally. He has to have 24 hour constant care in hospital except when I am there. I have asked hospital about Continuing Care if they find a home that can cope with his needs but so far they have said he doesn’t need continuing care when he needs constant 24 hour care in hospital. I have a meeting with McMillan shortly – Will they help me? Bea
Does’ interim package of care’ mentioned apply until full assessment takes place. Tried to get Nursing Home fees paid for until a decision is agreed after full assessment. CCG / NHS have come back saying they don’t cover these fees. Have we understood this correctly, (no mention of this discharged from acute hospital stay)?
Angela Sherman deserves a medal! I only found out about bits and pieces of this situation with the NHS through my uncle and father becoming ill, one with a stroke and the other with dementia. The NHS fought tooth and nail to prevent us getting help, as did the social services. I tried fighting both of them to a flat refusal to listen or help. Even though I presented them with the information I had they refused to listen. Even when I complained through the correct channels they refused to listen . In the end the ombudsman intervened when they nhs funded payments were kept by the care home and not reflected in the fees. I now know an awful lot more and the recent posts from Angela are more and more informative. It is still an uphill struggle when fighting the might of the nhs and social services who lie through their teeth at every opportunity once this happens there is no way forward it seems unless you can afford legal representation. How can we get past this even with the knowledge and information we have. What answer can we give them when they lie? Diane
Hi Diane – thank you for your kind comments. Just to let you know that Angela has not been involved in CTBD for nearly two years now but we are continuing the plight for all! Kind regards
My husband had Alzheimer’s and vascular dementia.Repeated urine infections.His general health was poor.loosing 10.5 kg in 2 months. He had several falls and was completely unaware of his inability to mobilise unaided. Frequent requests for fast track were ignored .knowing he was dying requests to transfer him home were delayed until he eventually died. Application for retrospective review was made in Frbruary 2018. How long is the waiting list for Wirral?
Hi there – many thanks for your comment. I am afraid that it can take a long time! Complain and chase constantly. All CCGs have backlogs. Kind regards
Just to let you all know that my wife has had her CHC funding review and that her funding will continue. They say that in accordance with the National Framework thy will also continue to review her.
Hi William – great to hear some good news! Kind Regards
Great News William,
I hope that gives you both some much needed time to relax a little. Your Wife should now be on annual review, so remember to keep a diary of events going forward.
Thanks for the replies. My wife is at home, I do everything for her she is peg fed and nil by mouth. Also catheterised . I am aware of the 12 domains that she may need. She should get what scores are needed but I realise it’s in the lap of the gods !! The re- assessment is due next week, the CHC social worker is out to see us Friday . I’ll let you know how things go
All the best……. Billy
My Mother has been in nursing homes for 45 years and I am still fighting the NHS over continual care.
The latest IRP meeting took place in April 2018 and the Chairman told me at the end of the meeting the decision will take longer than normal because the Football World Cup was coming up. (Total Disrespect for my Mother’s case. The CCG turned up with two nurses who promptly said they did not know my mother so could not answer any questions. The CSU also failed to turn up with one of the nurses who did the DST/MDT, they named the area manager to turn up but she didn’t instead they turned up with a young lady who answered the first question by saying I can’t answer any questions I have to refer them back to my bosses. (What a complete waste of time) the NHS get away with murder in the continual and retrospective care cases time and time again.
My mother had a Right Frontal Lobectomy Brain Operation with Multiple clips inserted in 1973 and a stroke in 2005 which has left her immobile. She has complexity, Nature, Unpredictability and Intensity and needs RN support. However the NHS can avoid all of this because they know the ombudsman is overwhelmed with cases like this and delaying the vulnerable the entitlements they are entitled to is normal for them. So everyone out there be prepared for a very long period of delays by the NHS just to get your case heard and then denied to save the NHS money.
My wife has PSP and has had 6 chest infections since April, 4 resulting in hospital stays. She stayed in our local hospice for 3 weeks for pain management,they fast tracked her onto CHC. She has a review coming up . Her condition has got worse. It seems to me it’s all about who pays for her care needs either the NHS or the council. This all adds to the pressure and worry about what the future holds !!! There is no cure for PSP. I had to finish work 4 years ago to look after her,originally she was diagnosed with Parkinsons.
William it sounds as if you have plenty to worry and care about. Unless you have an equal amount of time available to prep for the review, may I suggest you appoint someone to help you and your wife’s case?
I’m unsure whether she is now cared for at home or in care. Location of care shouldn’t matter, but increasingly it seems CCGs and CSUs acting on their behalf ignore this, and refuse to grant (or continue) CHC to patients at home. The ECHR case highlights this. CCGs and CSUs will stop at nothing to pull funding ; by claiming someone’s Dementia has got better, or that their needs are now at a lower level because their condition has declined eg as they’re now immobile, they are no longer at risk of falls.
I wouldn’t assume the staff of any care home or a GP to be as knowledgeable about CHC eligibility and procedure as the hospice was.
Further, I wouldn’t wish the obsession and worry I have experienced, at times, conducting my relative’s case on anyone. If you are able to appoint someone to help you prepare or check over your own work I thoroughly recommend it.
All good wishes.
Thanks for your comments. We can offer some 1:1 support if required. Please email enquiries@caretobedifferent.co.uk Regards
There are no details of when Funded Nursing Care should start in the National Framework 2018.
It would be very useful to have guidance on FNC in the same way CHC has clear guidance on when payments should start 29 days after the checklist.
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FNC can’t be considered unless CHC eligibility has first been considered, and so therefore (logically!) can’t start until after a clear and written refusal.
I seem to recall there was information about FNC in the Practice directions to the National Framework, but I haven’t yet looked for it in the latest version.
Failing that, it’s probably worth relentlessly pushing the local CCG or CSU for published policy.
My husband is in the late stages of Parkinsons, has a PEG in situ, unable to do anything for himself and is blind most of the time as he is unable to open his eyes. I was told a checklist would be done 2weeks after discharge but carers would come in 4 times a day. I suggested this should be funded and gave the paragraphs in the National framework. Only this morning I received the answer NO from social services.
Hi Rita – So sorry to hear this. Do let us know if we can help to assess the likelihood of your husband qualifying for full CHC. Just because they have said no doesn’t mean it cannot be challenged! Regards
Do any of the changes apply to retrospective claims?
I’d like to know that too please. Normally it’s not usual to apply legislation retrospectively, but this isn’t legislation, and as we well know “Anything Goes”. Is there a lawyer in the house?
The National Framework was never intended for use on retrospective case. The PHSO has stated that it is good practice.
When changes have occurred in the past CCG’s have tended to use the newest document when considering needs.
My agrument has always been that the eligibility criteria has not changed and needs should be considered holistically with due consideration of the 4 key characteristics.Kind regards
Thank you. Getting any written policy on procedure for retrospective cases has been challenging! Seemingly it’s an area where anything could happen if you don’t pin them down for accurate information from the start.
Particularly important then to keep the totality of needs in mind, referencing each of the domains to the “Score” definitions, and to pepper each domain with Nature, Intensity, Unpredictably, and Complexity then! I can see now why they’re so keen to avoid any consideration of the final domain in which the totality of needs can best be described, and all other needs and conditions mentioned as a “Mop Up”.