Here’s a comment posted by Emma regarding CHC Funding in reply to one of our previous blogs, which is typical of the frustration felt by many families going through the assessment process.
“Today I came out of an NHS Continuing Healthcare (CHC) Checklist meeting for my mother, with the next stage being the Decision Support Tool meeting. The assessor states she believes my mum’s care needs are social care…. which I find so hard to accept. In summary, my mum has been in a nursing home since she had a stroke back in 2014, losing her ability to use or move her right side. Unable to stand or weight bear, all aspects of personal care need to be completed for her. Severely cognitively impaired (says yes to everything!) she can’t even point to a picture if she wants a drink. EVERYTHING has to be anticipated for her. Double incontinent, changed 5 times a day. She has to be washed and changed twice a night. She’s unable to communicate her wants or needs or if she’s feeling poorly. Epilepsy (last seizure over a year ago) diabetic (insulin required). Starting to show signs of pressure sores. Recently diagnosed with dysphasia and now at risk of aspiration. The staff and the level of care she receives is fantastic. I’m basically looking for a bit of guidance or pointers, does this sound like social care??? Am I wasting my time trying to get funding? Thanks in advance.”
Thank you Emma for sharing your experience with us.
In answer to your situation – no, you are not wasting your time!
Our advice: firstly, don’t get disheartened and do not give up if faced with such comments!
But why is this scenario so common amongst our readers and those seeking NHS Continuing Healthcare Funding (CHC) for their relative?
Yes, it is very hard to accept such disparaging comments when your relative presents with multiple healthcare needs across various Care Domains – as in Emma’s situation above. Particularly so, as you are going to be emotionally invested in trying to secure CHC Funding. As in Emma’s case, it can be hugely frustrating to hear a CCG assessor say that your relative won’t qualify for CHC because her needs are ‘social’ needs, not ‘healthcare’ needs.
Understanding the difference is critical to success: Social needs are provided by the Local Authority and are subject to means-testing. So, if you have capital or assets in excess of £23,250, you may have to pay for all your relative’s care needs.
NHS Continuing Healthcare Funding is free funded care provided by the NHS irrespective of your financial position.
For more in-depth reading, look at our blog: Apply for NHS Continuing Healthcare Funding if your relative has a ‘primary health need’…
You know your relative better than anyone, may see them daily and are best placed to see their challenging behaviours and limitations. Yet an NHS assessor comes along at an appointed day and time to make an ‘on the spot’ assessment of their healthcare needs. The outcome of such a relatively brief assessment is invariably likely to be negative, leaving you feel down and disheartened – often left trying to fathom out how ill your relative has to be, to be eligible for CHC Funding. There is a common misconception that an individual has to be ‘at death’s door’ to get CHC. That’s simply incorrect! For more information, read our blog: This month’s top 5 questions are answered…
You are then left in disbelief, having to understand the CCG’s refusal to grant CHC Funding, and justify why your relative’s needs are more than just social needs and qualify as healthcare needs.
Such a negative outcome may cause some families to give up. Perhaps, because they just accept the CCG’s decision to refuse CHC as being correct, sacrosanct and beyond reproach. After all, you have tried, given it your best shot, but the NHS have said, “No” – so, you may decide that is the end of the line and there is nothing more you can achieve.
Others may want to challenge the decision, thinking it perverse, and totally contrary to their relative’s healthcare needs – but may lack the physical and mental stamina to continue the fight, or else lack the wherewithal to even know where to start an appeal!
Others, who do appeal, face an uphill lengthy battle against the CCG to get the outcome overturned.
If you are told that your relative’s needs are social needs and you genuinely disagree on good grounds, you must argue your case and appeal. An award of CHC could save your relative paying a fortune in care home fees – hence why the CCG may try and put you off claiming, by perhaps suggesting that their needs are social needs.
Read our blog: What to say when denied NHS Continuing Healthcare where you will find more tips relating to the appeals process. You can, of course, make it clear you’re going to appeal – and then you’ll need to challenge (in writing) all the mistakes made during the assessment process. You’ll find several articles on the appeal process here.
Of course, every case depends on its own particular facts, but some of the health needs mentioned in Emma’s scenario above will seem all too familiar. Yet some individuals may get CHC Funding, and others may be declined on the same facts. The chance of funding varies according to the area you live in.
We recommend you read our book “How To Get The NHS To Pay For Care” or else visit our one-to-one page for individual assistance.
Share your experiences below if a CCG have made comments similar to those made to Emma, and let others know how you responded.
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Nursing Care versus Personal Care is a spurious distinction. If you go into hospital you receive care and nobody tries to distinguish between personal and nursing, the distinction does not exist. My mother was in Residential Care for nearly nine years and towards the end of her stay I downloaded and worked though the assessment tool and thought she certainly qualified for an assessment (I am a Registered Nurse with a number of decades experience).
The point is made I believe that in a nursing home a Registered Nurse is on duty. However most if not all of the care will be managed by healthcare assistants. Worth pointing out that in residential care that is Local Authority Managed there is still large input from community nursing services and general practitioners. So a resident’s condition is causing concern e.g. suspected chest infection or urinary tract infection you call the District Nursing Team or the GP in residential care. In a nursing home the nurse in charge calls the GP and/or district nurse. In either situation it comes down to the commonsense of a well intentioned non qualified individual to raise an alert.
Anybody who looks after an elderly person with multiple infirmities will need a certain amount of training and will build on their experience. I am trying to tap into and break down this distinction between personal and nursing care.
Nursing Care is a holistic concept and no two cases are the same. It also strikes me that the process of panel decision is very subjective, according to the panel’s interpretation of guidance.
My mother was self funding and we understand paying more than a resident who was local authority funding.
I am thinking of a retrospective claim but its all time and energy.
National newspapers run campaigns every now and again, which are short lived. Its an unjust system and there seems to be no focus or momentum towards a national campaign.
I am just starting this process for my Mum who has also had a stroke and while her symptoms are as extreme as Emma’s mum’s my Mum has numerous chronic conditions which my Mum’s aphasia and dementia and reduce cognitive function post-stroke make it impossible for her to manage herself or for someone without medical training to properly and safely monitor and manage.
We were told by the hospital that Mum needed 24 hour care once the outcomes of their rehabilitation efforts had plateaued (another story about inappropriate therapy approaches for pre-existing dementia and elderly patients). I had head about CHC so asked for Mum to be assessed for this before we started looking at homes. An assessment was done but it turned out it was NOT the CHC one I had requested. It was done by a district nurse to assess Mum’s nursing needs for the social workers – all eagerly awaiting getting their hands on Mum’s house no doubt!!
I have now dug my heels in and with the help of the home into which Mum has gone (a dual registered one with a dementia unit too), we are going to start the CHC assessment process.
The social worker is trying to pressure us into completing the paperwork for means testing – dangling the carrot of 12 weeks funding even if we are self funding. But we are not biting until we’ve got the initial CHC assessment done. I am also seeing how, as a family, we can hold off having to put Mum’s house up for sale as if we do get the CHC funding we won’t have to sell after all.
I’m so glad I’ve found all the wonderful advice on this site – as well as hearing about successes, tricks and traps!
Good luck everyone!!
My request for checklist assessment on NHS Dementia unit was refused by his Consultant as he would not qualify! i stated it was for the LA, Nursing and myself as his RPR under DOLS to go through the Domains. The process started in Hospital, was supposed to continue when discharged to Nursing Home! it started again. (third time) each time a change is made the process starts again. It was a hard ‘battle’, the CCG assessor is operating under a conflict of interest, and did Report he did not qualify, however the LA assessor disagreed, and it continued to the next stage, eventually receiving CHC, he was admitted to Hospital and died soon after.
Beware of Nursing Homes not applying for funding from the CCG (FNC) i think about £158? a week reducing the initial costs.
CHC does not start immediately, but a disregard of around 49 days from the Checklist, however if you have not received
FNC deduction from your Initial cost, make this known to the CCGs, who will include this with repayment of costs incurred by yourself, and interest will be paid as well.
Please check for accuracy on CHC 49 days after checklist, and amount of (FNC) £158 per week?
Emma, without a shadow of a doubt your mother qualifies for CHC. It is a matter of law and not NHS policy. Your mother`s condition sounds a lot worse than Pamela Coughlan. Pamela Coughlan`s case is the landmark case that decided the boundary between social care and NHS continuing health care. The primary health need test set out in the national framework is not the test applied by the courts because of the associated problems in applying this test. The test that the court applied is based in law and mentioned in the framework but not understood by the practitioners. Quite frankly the nurses, doctors, assessors, care, home managers, social services officers have not got a clue about the legal aspect of CHC because the CCG that employs them do not give them the proper training. The CCG understands but are trying to preserve budgets and if they can get social services to pay then the patient will be contributing also if they have assets above £23000 aprox!!! This is the CCG`s game plan orchestrated by the Secretary of State. It is not lawful and is fraudulent. The lawful test is based on the limits of care that social services can not go beyond, Section 22 of the 2014 Care Act, which is still the same as the original 1948 Care Act Section 21(8) nothing in essence has changed, legislation is still the same.
The legislation states that if the level of care is merely incidental and ancillary to the accommodation and of a nature that social services can provide then social services can provide the care but if either of these conditions are exceeded than social services cannot provide the care. It is a simple quality quantity test based on the level of need that Pamela Coughlan had.
The guidance and I stress it is only guidance and law has precedence over guidance, given in the framework is wrong and does not follow case Law. Pamela Coughlan`s condition was judged to be well beyond the level of care that social services could provide and well into the territory of care that the NHS could provide. If the NHS can provide the care then the social services can not. The social services statute is the statute of last resort. So if your mum`s needs are the same as Pamela`s or worse then she qualifies for CHC which is free. Actually its not free your mum has paid for it all her life from her national insurance contribution!!! She is being denied her legal entitlement to health care. In law It is a denial of a substantial legitimate expectation. Free health care for every man woman and child from cradle to the grave irrespective of income or wealth. Aneurin Bevin Priminister 1945-1951 this was the promise.
The NHS/Secretary of State have distorted their legal obligation to provide CHC with the introduction of (FNC) funded nursing care with the misconception that the NHS is only responsible for paying the registered nursing care element of the care. This is palpably wrong. Provided the care that you need is primarily for health needs then you are entitled to CHC.
By definition Coughlan Case (paragraph 31) and the secretary of state agrees and it was clearly established that where a person`s need is for health care and this is why they are placed in nursing home accommodation, the NHS is responsible for the full cost of the package. Contrary to government guidance, social services can only purchase care in strictly limited circumstances, in accordance with the judgment. Quite honestly i thnk the quickest way to solve the problem is to refuse to pay care home fees. Let them take you to court for the fees you should not be paying for then you can make your legal representations which the NHS do not allow you to make in their appeals process because they say it`s outside their remit. The NHS don`t want to go there because they have lost catastrophically in the past. The down side is they might move your relative to a less desirable home or location or back to hospital if you get evicted from the home this is the risk. It is a legal matter and if the NHS don`t want to dicuss it then a judicial review will make them do it. The appeals process is a total waste of time and resources. Hope this helps.
Further if the relative is in a care home and has savings under £23k then the LA can take the pension leaving them with up to £30 a week to spend that’s it. We have won a primary health need on a quantity basis simply because ALL the care was either provided ( meds) planned (care plans) or supervised ( includes carers under instruction of RGN ) by a RGN. The domain and nature scoring was a pen exercise just to prove to NHS themselves that the person qualified. We as well as a solicitor had worked that out just from the host of care plans written that it was all healthcare and neither we or our solicitor are health professionals.In our case which was retrospective the care had already been given and you would have thought with written notes/care plans it was obvious, but it has still haven us over 5 years to get eligibility. Also we did not need a judicial review, just a threat of Court action over a predetermined cost of the nursing home.Perhaps the Letter Of Claim we issued should set the standard for these issues.
My situation with my husband is very similar to Emmas. An absolute nightmare. I am considering an independent review so wish me luck.
I had the IRP for Mum’s care in January this year – we applied for the hearing in September 2017. Mum was refused NHS CHC when she entered a care home. Even though she was refused funding, she had to be sectioned 4 months later, so is now covered under section 117 aftercare. The decision to refuse funding was overturned by the IRP, and the local authority now owes Mum £13000. We are just waiting to be paid.
My mother has symptoms very similar to those of Emma’s mother. Following a stroke she was left paralysed down her right side, unable to communicate or swallow. On first entering the nursing home she was fast tracked on to CHC funding. After a review, although I was told at the DST meeting my that my mum would be recommended for CHC funding, I received a phone call (nothing in writing) that my mum would have to finance her care. Like Emma I was told that my mum’s needs were “social”. This was in spite of a statement from a health professional that my mum would be at risk of “severe physical harm” if her care was to be reduced. I have followed several appeals procedures and I am now awaiting a decision from NHS England. The system appears fraught with inconsistencies.
Yesterday my sister and I had our IRP, after over seven years in appealing and getting turned down we are determined to fight to the end. It has been an emotional struggle every time we go through reading about our father and the suffering he went through. We wer faced with seven professionals all listening and giving an input and not once did my sister or myself feel intimidated as we KNOW that what we are fighting for my late mother should have been entitled to. We are very strong and are just waiting to hear the outcome, I am very proud of my sister and myself for showing them we would not give up.
Start with a daily log of what care the nursing home is providing hour by hour .This should also include time taken by staff to log daily records, write up careplans, administer medication etc. Also remember healthcare includes care given, planned and supervised . Get all the care plans, daily records in fact ALL records from the home.You might find as we did ALL the care plans were written by a reg nurse proving it was all heathcare. Look up definitions of heath care and social care. Ignore any of their assessor comments such as social, domestic, managed ,all the usual phrases !Then you need to go through the DST yourself and reconsider each domain score. We had a local review and independent review which each time raised the domains to and eventual 2 severes at IRP which it should have been from the original DST. The DST had also stated care wasn’t intense as planned routine managed yet independent reviewer said because of the quantity and continuous health care it was a primary health need.Just shows how inaccurate these original DST’s are !A lot of hard work and time was required so if that isn’t for you consider solicitor help which would be worth it if funding is needed over several years.