We have come across several examples recently where individuals have been assessed for NHS Continuing Healthcare Funding, but have either never been told the outcome, or else have been given a positive outcome, but NHS funding was never put in place.
We’ll tell you how to handle these situations, but first the background…
NHS Continuing Healthcare is a package of ongoing care for long-term healthcare needs which is funded solely by the NHS, for an individual, aged 18 or over, who meets certain prescribed criteria due to their intense, complex or unpredictable and challenging healthcare needs, usually arising from a disability, accident or illness.
Getting NHS Continuing Healthcare Funding (CHC) can be a difficult and complex process, which many families find fraught with stress, anxiety and emotion, as they battle with their local NHS Clinical Commissioning Group (CCG) to try and secure free funded NHS care for their spouse or relative.
The bar to achieving CHC Funding is set high and many individuals who apply are turned down as their healthcare needs simply don’t meet the eligibility criteria. But, if successful, it can be a huge relief as the financial burden then passes to the CCG. The CCG then has direct responsibility to pay for the individual’s assessed healthcare needs (including social care needs) as well as their accommodation. In effect, all care fees should now be paid for in full, free of charge, by the NHS.
So, where applicable, accessing CHC Funding is critical as it can save families many thousands of pounds a month in self-funding care fees.
The ultimate need to secure funding is stressful and weighs heavily on most families going through the assessment process. They quickly recognise the vast financial gulf between their relative being found eligible or ineligible for CHC Funding, and the potential risk that their relative could lose their life’s savings or have to sell their home to pay for their care, if unsuccessful.
The Full Assessment at an MDT
The full assessment for CHC Funding is carried out by a Multi-Disciplinary Panel (MDT) whose objective is to make a recommendation as to the individual’s eligibility for CHC. The MDT are obliged to follow the assessment process set out in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.
The MDT will consist of at least 2 panel members who are from different healthcare professions; usually one healthcare and one social care professional. Where possible, it is recommended that the MDT assessors have recently been involved in the assessment, treatment or care of the individual, are familiar with their needs, and have been trained in the National Framework and how to conduct robust and fair assessments.
The MDT assessors will collate and review the relevant information on the individual’s health and social care needs (usually by reference to care home, GP and hospital records).
The MDT assessment is intended to be ‘person centric’ and put the individual at the heart of the assessment process. It is important that their needs and views (or those of their appointed family or professional advocate) are taken into consideration and not ignored or dismissed out of hand. The family representatives must be consulted and invited to attend the MDT; failure to do so is an abuse of process and immediate grounds for appeal.
The assessors will review the evidence and complete a picture of the individual’s healthcare needs using the Decision Support Tool (DST).
The DST is simply a means of collating and consolidating the evidence in a practical written format in conjunction with predetermined ‘descriptors’ as to levels of need. It is not the decision itself.
Using the evidence set out in the DST, the MDT assessors will then make a professional judgment about whether the individual meets the eligibility for NHS Continuing Healthcare.
Based on their findings and judgment, they will then submit the DST and their conclusions back to the CCG with a recommendation as to CHC Funding with their reasons (‘rationale’).
Ultimately, the CCGs are responsible for decision-making as to eligibility for CHC, which should be based on the MDT’s recommendations. After all, their appointed assessors have had the benefit of spending time with the individual and their family representatives, and reviewing, and (hopefully) carefully listening to their needs. So, unless the MDT assessors’ recommendation is perverse and against the run of evidence (or more information is needed), you would usually expect the CCG to follow the MDT’s recommendations.
The National Framework states that: “Only in exceptional circumstances, and for clearly articulated reasons, should the multidisciplinary team’s recommendation not be followed.”
But beware! Just because the MDT have given the family positive encouragement and have recommended CHC Funding, it isn’t guaranteed. Unfortunately, we have noted an increase in cases where CCGs have taken a contrary position to their assessors’ recommendations for CHC.
Once the CCG has made its decision as to eligibility, the outcome should be notified in writing to the individual as soon as possible (usually within 48 hours/2 working days) of receiving the MDT’s recommendations. In addition, for transparency, the individual should be given a copy of the completed DST, the rationale for the outcome decision, and where known, an indication of the proposed care package and what the next steps are.
What happens if you don’t receive the decision outcome letter?
Much thought, time and preparation is needed if families (or their appointed advocates) are going to represent their relative at an MDT. Good preparation and planning is essential. As stated above, the outcome is critical in terms of who pays for care. The MDT is often the first real chance of securing CHC, and a good showing at the MDT is essential for early success.
We recently heard of a scenario where one family had their MDT about 2 years ago and the assessors indicated they would be recommending CHC Funding, but despite numerous chasers, are still waiting for the CCG’s outcome letter to arrive. So, having pursued their relative’s complex claim for much needed CHC at an intense MDT, spent hours preparing and reviewing the notes and records, rehearsing the evidence and their arguments for the assessors, having sleepless nights, and suffering with anxiety knowing how important the outcome is, it seems grossly unfair and unreasonable that the outcome decision still remains unknown. Understandably, this has caused distress and left them hugely frustrated.
If you don’t hear anything after 2 days, you must chase the CCG. Do not give up!
If your relative is found eligible for CHC, the CCG should arrange to take over payment of the care fees with immediate effect, wherever that care is provided, whether at home, in a care home, or other care facility. The CCG will contact the care provider and enter into a a contract to arrange payment. So, it is in your relative’s interests to chase up this decision. Why wait longer than necessary? Don’t be afraid of chasing frequently once the 2 day period has elapsed. If you don’t, your relative could miss out on vital care or end up paying for their own care unnecessarily!
If appropriate, lodge a formal complaint immediately with the CCG and copy in the Chief Executive.
What if CHC is awarded but not paid?
It does happen that a CCG will ratify the MDT’s decision and confirm that the individual is eligible for CHC Funding, but then omit to set payment in motion or implement the assessed package of care. As above, it could mean that your relative misses out on essential care (eg if living at home) or ends up being chased by the care home for payment instead, risking eviction.
If a relative is being cared for at home, that can force family members to give up work to look after them or paying for additional carers to come in to help out. Looking after a relative at home with complex and challenging needs can be extremely difficult and tiring, not to mention challenging.
So, be sure to chase up payment and don’t just assume the CCG will pay on time! Things can slip through the net. Although rare, it does happen, and you need to be alert to make sure it doesn’t happen to your relative.
If you are looking after a relative who hasn’t received their CHC care then consider making a claim against the CCG for restitution.
The NHS Continuing Healthcare Refreshed Redress Guidance will assist you if you’ve suffered any financial loss (e.g. taken time off work and lost earnings), been caused distress, had to pay for professional carers to come in and do the job the CCG were supposed to action and pay for. Keep a note of all additional time you’ve spent, and all invoices and receipts. You may well be able to claim them back on account of their maladministration. Keeping evidence of your expenditure and loss is vital.
The Refreshed Redress Guidance maintains the long-established principle that “where maladministration has resulted in financial injustice, the principle of redress should generally be to return individuals to the position they would have been in but for the maladministration which occurred.”
Before you embark on a claim of this nature, we recommend that you seek professional advice to assess the merits of your claim and to maximise your losses. If you need help, visit our 1-2-1 Support page.
Our Care To Be Different website is packed full of helpful articles to give you advice and assistance at every stage of your assessment for CHC. Here’s a small selection of related articles that you might find helpful:
Preparing for the Multi-Disciplinary Team Assessment
Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls
What to do if you’ve been excluded from the MDT Assessment?
Retrospective Review Claims – Everything You Need To Know About Claiming Interest
Paying Unfair Top-Up Fees? Latest Developments Will Send Shockwaves To Care Homes
Problems with care home records? Mind your language…
Let us know if you’ve ever had to wait an inordinate time to receive your positive outcome letter following a successful MDT, or never received funding after an award was made in your relative’s favour…
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Good morning great website
trying to put things in a nutshell we have begun the long process of appeal for my mother in laws chc funding after being turned down by the DST assessment team we believe all of mums care needs wasn’t taken into consideration on most of the domains and of course the 12th doman was missing we have forwarded on a file to them explaining our concerns and so the appeal process begins just 2 hours after the rejection e mail we had a email from social services asking how mum was now going to fund her care home needs (she was admitted to hospital then care home ) 6 weeks ago following a stroke which has basically left her bed ridden anyway we have since found out that during the initial DST meeting that they did not have mums GP records to hand which is a bit confusing as not sure how a complete assessment can take place? this meeting took place by way of a telecommunications call due to myself and wife live in france plus all face to face meeting are suspended due to the current climate my question really is the social services want access to mums assets (she has very little) can they ask for payment when we are currently going through the appeal process? many thanks phil
Hi Phillip – do get in touch with us direct if you would like any assistance with challenging the decision. Kind regards enquiries@caretobedifferent.co.uk
Hi Philip, And so begins the nightmare that is CHC! If you are serious about appealing the decision you will need to learn fast!
engaging the services of a specialist will be costly, so my humble advice is to study carefully the ineligible assessment and determine whether or not you have any further evidence for the period of assessment that would significantly alter the domains. Your MIL’s needs must be for health. If you feel this is the case then challenge the decision. There are plenty of articles on here that will give you advice on how to do this. In the meantime tell S.S that you are appealing the decision and until the outcome of that is known they cannot know if you mother is eligible or not and that a means test is inappropriate.
You may well have to pay for the care in the interim but if you are successful in overturning the decision …..which is by no means easy……then you will be able to recover that money.
Good luck and whilst you here can I point you in the direction of the judicial review of CHC by retired rear admiral Mathias, who is campaigning for all of us!
Good Luck.
My wife died before her CHC assessment was completed, I received a phone call yesterday 27/01/2021 telling me her claim had been rejected.
I first applied for CHC on the 07/09/2020, after 135 days this is the first time I have been contacted.
Regards Ray Welton
Thanks Ray – fairly typical I’m afraid. Do get in touch if you’d like to chat this through. 0161 979 0430 Kind regards
Indeed typical. I had to chase at every stage of the process ; to get an assessment, to get them to accept my relative had no capacity and I had Power of Attorney, to get an outcome, to get a refund of fees paid whilst they decided upon his eligibility (he had 4 Severes), to get them to start paying the care home (it took the CSU 18 months), to get proper notice of a Review (never ever got a care plan from them) to get a retrospective consideration of a period previously unassessed, to get the reimbursement of that period (plus interest) and then to get Restitution for the time, postage and advice needed to achieve the retrospective award. It’s almost as if they want to avoid accountability at every turn. Include the Chief Exec of the CCG or CSU in every Signed For communication is my best advice, don’t rely upon email – leave nothing to chance, and certainly don’t rely on phone contact.
Hello Raymond,
I’m sending you my sincere condolences on the death of your wife.
It’s a very sensitive time for you and your family as you grieve, so you may not want to even think about the process of CHC and the claim being rejected. It’s a common occurrence for claimants to pass away during the process. My own father died during the three year appeal process. I successfully appealed at IRP and my father’s fees were restored in full.
I’m guessing because you have come to this website, you feel the decision
was wrong? Quite how your CHC can reject a claim without the full assessment being completed is baffling! I’m definitely interested in this point and how long your wife had been paying for care. Maybe in the next few weeks you will feel strong enough to contact your CHC and ask for the reasons for rejection to be documented and sent to you. This will then enable you to scrutinize the procedure taken. The process is governed by regulations/law covering the National Framework for Continuing Healthcare. This website will help you to understand how it works!
You have a right to appeal the decision and you should be sent the full details on how to do this. The appeal process is complicated and time consuming and the emotional impact can be overwhelming, so you may well want to ask for professional help, which can be costly. Whatever your decision, good luck and again my condolences.
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